Monday, April 9, 2012

SMAvery :`(

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing.  If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

Friday 04/06/12, around 3:30p, my mom & dad received a call from my neurologist and the SMA (Spinal Muscular Atrophy) test results came back positive.  Meaning the worst case scenario has occurred and I have been diagnosed with SMA Type 1.


What is SMA:
SMA is the #1 genetic killer of infants & children under the age of 2, yet most people have never heard of it, most OB/GYN's do not offer tests for it, and it's not included when performing genetic pre-screening tests for other potential diseases & disorders.  There is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs - especially of the respiratory system - and eventually leads to death.  1 in 40 people are carriers of the SMA gene.  Meaning my mommy and daddy had a 1 in 1600 chance of both having it and even then there was only a 1 in 6400 chance I would get it. 

Effects of SMA and My Life Expectancy: 
I have already lost the ability to move my legs and eventually I will lose the ability to move my arms and my head.  When that happens it will be difficult and eventually impossible for my body to pump air through my lungs which is why most babies, like me, who are diagnosed with SMA type 1 have a life expectancy of less than two years of age with some dying in as little as a few months or even weeks of birth.  In some cases children like me can survive with the dependency of a respirator, but more often than not, our life expectancy is still less than ten years of age and even lasting past two years of life is not guaranteed.

Some good news:

While SMA attacks my muscles and is completely physically debilitating, it does not attack my mind or my cognitive skills.  Therefore I'm aware of my surroundings and I communicate very well with my eyes, facial expressions, and smiles.  I love when people make funny noises at me, play with my legs, sing me songs, and look at me and smile.


Why I'm Sharing My Story: 
My mommy & daddy were offered genetic testing, but within those tests, the SMA test was not included.  So the first they'd ever heard of SMA was when I was 4 months old and my neurologist told them I might have it.  Mommy & daddy asked all of their friends, family, co-workers, and anyone else if they'd ever heard of it.  Not a single person answered yes and this included some doctors & nurses.  Through my life, I want to make sure other children and their families don't have to go through what I'm going through and what my mommy, daddy, and everyone I love are going through with me.  The only way to do this is to make people aware of SMA so they know they have the OPTION of getting tested for it.  That's all I want and that's all my mommy & daddy want for me and all of my future friends.

The bottom line:

I have SMA Type 1 and there currently is no cure.  The reality is that this disease will take my life at some point and there is currently nothing that can be done to stop it.  So at this point, my family & friends can either sit back and watch me die and let my life be about doctors visits and tear filled days or everyone can embrace what my future holds and we can make each day I'm here a memorable one...starting now.  My mommy, daddy, and grandparents have chosen to help me fight this disease, while embracing this news and helping me chronicle my "bucket list" experiences through this blog.  If you have any ideas for, or would like to be a part of "Avery's Bucket List", feel free to tell me or my mommy & daddy!

How to React:

This news is terrible for everyone and a lot of times people try to be strong for people in situations like this, but me along with my my mommy & daddy will all tell you that we don't expect anything from anyone.  If you want to cry with us, cry with us.  If you want to make us smile, make us smile.  If you want to pray, pray.  If you don't know what to say, say nothing at all.  If you're sorry, tell us you're sorry.  If you love us, tell us.  The truth is in a situation like this there is no right or wrong reaction and there are no profound words to be spoken and we understand that.  We are here for you every bit as much as you are here for us and in a weird way it's soothing for us to know that.  Just remember when you're in front of me, seeing you smile makes me smile.

In conclusion:

Me, my mommy, daddy, Nana, G-Pa and all our family & friends are heartbroken, angry, sad, and afraid of what my future holds, but we are all fighters who are strong and loved by many, and probably most importantly we are all in this thing together.  My mommy & daddy and my Nana & G-Pa have all managed to surround themselves with amazing friends & family who have supported them through many tragedies in their young lives.  My Grandpa George died when my daddy was 13, then my Nana Carolyn died when my daddy was 20, and my mommy, Nana Sandi, and G-Pa lost my Uncle Bryant when he was only 22.  It is the love my parents & grandparents share for me and for one another, along with the love of all their & my friends & family that will eventually help all of us get through this tragedy as well.

P.S.

I was born smiling and here's some pictures from Easter as a reminder that I'm still smiling today...SMA please don't take my smile away.


Avery: "Hey daddy, why no bunny business?"
Daddy: "Oh, I'm sorry Aviator, would yoooou prefer I join yoooou in smiling like Bill Cosby?"
Mommy: (gritting her teeth) "both of you stop talking and smile."




Me & My Peeps
Hanging With My Grands


Items I Can Scratch Off My Bucket List:
1. Celebrate Easter
2. Wear pink fuzzy bunny ears.
3. Try to keep my eyes open while staring directly at the sun.
4. Make my mommy, daddy, Nana, and G-Pa all smile.
5. Pretend to be too good for the camera while looking the other way.
6. 
Make my best Bill Cosby smile (you should try it...just say "you put the pudding in the pop" then smile!



Don't forget to share my story by following & forwarding my blog, following me on Twitter  (AveryBucketList) and Like Me on Facebook (Averys Bucket List)!  While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!



If there's anything you'd like to mail me, you can send it to:

Avery's Bucket List
PO BOX #2849
Bellaire, TX 77402


Also, my mommy & daddy wanted me to make sure you know that all monetary contributions will be used towards continued SMA awareness and the further advancement of research to find a cure for SMA.  If you feel more comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

Fight SMA (www.fightsma.org)


If you donate directly to Fight SMA please let me know so I can keep track of reaching my bucket list goal of raising at least $1,000,000 towards a cure for SMA.

203 comments:

  1. Send Avery a huge hug and lots of kisses from us. Monica, Michelle and Mateo Mendez.

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  2. Avery, you are lucky to have such a great family. They love you and will try to make everyday special. You are a beautiful child with a wonderful smile!

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  3. Avery is so lucky to have parents like y'all just as much as you all are lucky to have someone like Avery bring so much light into your hearts. We are all here if you need us and we love y'all.
    Stephan, rob, olivia

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  4. Enjoy making memories everyday. Find God's grace in everything you do. We love you. :)

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  5. I'm 6 months pregnant, and the thought of going through this with my little one is terrifying. Reading your post made me cry my eyes out. You are all so strong! I can see the love in all your pictures... And what an adorable little Easter angel you have! I truly hope the only suffering that comes the way of your family can be absolved or at the very least learned from. What are the other items on baby Avery's bucket list? Is there anything more I can do to help?

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  6. Hi Avery! I don't know you or your parents but one of my sorority sisters does (Caroline Wilson). I work with kiddos every day and thought of something for you to add to your bucket list. Ask your mommy and daddy to buy some bubbles and blow them for you! Very fun! Your family will enjoy the look on your face when you see bubbles for the first time!
    Take care of yourself!
    Miss Mia

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    1. Great idea and consider it done!

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    2. And if you, Avery, have mommy or daddy or whoever else is loving up on you at the time, blow the bubbles on your belly(bare of course), you will for sure smile because it will tickle. Now that is fun!

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  7. Avery, You are Blessed to have so many friends surround you with thoughts and prayers. We love your mommy & daddy very much. One idea for your list is to watch a Bellaire Little League game with a bunch of your fellow Horn friends on the field. That's sure to make you laugh!I have a feeling your Spring is going to be very busy laughing and smiling. :)

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  8. things to add-get a "tattoo" (temporary ones count :) ) have a father-daughter dance while watching father of the bride with Steve martin, feel the sand under her feet and dip her toes in the ocean, wear mommy's high heels, makeup and jewelry then have a photoshoot, go.to a concert, get pink hilights in her hair, have her first "kiss", have a tea party :)

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    Replies
    1. My mommy says, "we can totally do all of that!" Thank you for the great ideas!

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    2. I have a picture of me wearing my Mom's wedding dress! Maybe she can do that, too!

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    3. If there is anyway for you to do this, you should take her to a prom. Also you should make her a high school deploma (fake of course). You should also dress her in school clothes and a backpack for her first day of school!

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  9. I am a friend of Cary Zepernick and she posted your beautiful blog on Facebook. My best friend's son Cooper was diagnosed at 4 mo. He is our light, so I know what y'all are going through. It is so unimaginably difficult, but as we've found with Cooper, there is HOPE! There is a HUGE support network and if you'd like, I would be happy to have Crystal(Cooper's mom) contact you via email, Facebook, phone, etc. She has gained an incredible support system and I know she'd be happy to talk with you about what they've been through. Blessings and prayers with you all!

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    1. JD:

      Believe it or not my mommy spoke with Cooper's mommy last night and again this morning and we are all supposed to meet sometime soon for lunch. They were somehow connected by a mutual friend of a friend and this is proof that this is truly a small world.

      Thank you for reaching out and wanting to help us!

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  10. We second the trip to beach! Nothing cuter than a baby in a bikini! Also have Mommy and Daddy take you to the park and hold you in a swing so you can go really high; find someone with a convertable with a backseat so you can feel the wind in your hair; have someone whip you up some yummy homeade vanilla ice-cream; have Mommy and Daddy get some construction paper and shaving cream to let you create your own art work, and make sure to go see the beautiful blue bonnets....

    The Harris Family (Trey, Angie, Georgia, Jack and Elle)

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  11. You are a very beautiful strong loving family. You have so much love and faith. I only wish I could be half as wonderful as ya'll are. You are in my prayers and thoughts. Make sure to add butterfly kisses and Eskimo kisses to that list. God be with you and you all have a place in my heart. (Kim Will Hannah and Kailey)

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    1. Avery, Thank you for letting us be a part of your life.
      I would love to come by. I have some very nice bubbles and hugs. You are loved. Mary

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  12. What an inspiration all three of you are. She is so lucky and blessed to have such loving parents. Your story will hopefully remind everyone to squeeze their loved ones just a little tighter. Avery looks like such a joy and light and I am so happy that she is here to change your lives as well as those around you. Know that you all are close to my thoughts and in my prayers and I am excited to read about all the adventures and memories that you will be making together.

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  13. Mike and Laura, I'm reading this now and I understand how heart breaking. You are a strong family and blessed to have your little Avery with you. She is as beautiful as you both are. And I'm every bit sure she knows how loved she is from all the smiles I always see of her on your page. Hugs to your entire family for being such great support for each other. Love Always Nazy

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  14. Smell all the best smells in the world. An Easter Lilly, Mom's and Dad's favorite cologne, freshly cut peaches and strawberries and anything else your beautiful, strong and resilent parents and grandparents can find. Love you lots

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  15. I am amazed by your strength and courage, and I admire your devotion to your beautiful daughter. Avery is here for a reason and I think she has a lot to teach all of us. She will surely live a beautiful life thanks to her loving and devoted family. I would be honored to meet her and see that sweet smile! Add to the bucket list: I perform in a ballet recital.

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    Replies
    1. Oh the ballet recital is a precious idea! A dancer could hold her and make her part of the performanc

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  16. Awesome story & what a wonderful way to celebrate such a special child! The Bucket List should definitely include trying on Mommy's wedding dress & being photographed in it, wearing big bows, ya know the kind...that everyone stares at and wonders what is bigger, the baby or the bow (it's a Southern thang), and a special date night with each parent. My triplets just got to experience that for the first time last weekend. AMAZING. Many positive thoughts coming your way!

    Astrid

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  17. Helped to spread the word atleast through facebook! My prayers go out for yall and my heart swells with pride at how wonderfully you have taken this news and how you are handling it. I am so sorry for everythign that you are going through. The tears continue to fall as I type this. Your little girl is very loved and seems to have very many people even in heaven to take care of her! ** Bucket List Trust God. He has a Plan. Lay in the grass and watch the clouds go by. Celebrate the 4th of July With As many fireworks around you celebrating your life!**

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  18. My daughter Amelia is about the same age as Avery, I can't imagine the pain that you are going through. I'm sitting here bawling, thinking about what it would feel like to know I'm going to lose her. No parents should have to go through this but its amazing how you are viewing this. She may not have a long life, but by having her bucket list you are making sure its cram packed with memories. I can't even put into words what I want to say. You are amazing!

    Make sure to do hand prints and foot prints for every month. Go to the beach and get seashells. Just cuddle with Mommy and Daddy and enjoy how good it feels.

    Much love to Mommy, Daddy and Avery

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  19. Beautiful Avery, thank you for teaching me about SMA. Your little self has inspired me to make sure my 2 year old son marks something off his list as often as possible. Thank you sweet girl. You definitely made me smile :) Prayers to you and your family <3

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  21. Dear Avery, I have never met you, but I have seen lots of pictures, you are beautiful. I have two children and I love being with them. I am not a good singer, but they love it when I sing to them before bed, 7 years later and they still request the same 4 songs. Have your mommy and daddy teach you their favorite songs. Have them take you on a bike ride so you can feel the sun on your face and wind, it is truly breathtaking and will make you smile for sure. Have mommy tell you all the reasons why girls are so much sweeter than boys and how your dad got so lucky to meet a girl like her. Have daddy take you to the zoo so you can feed a giraffe and feel it's silly tongue on your hand, it will definitely make you giggle. I would love to meet you soon and read you a couple of my favorite baby books if okay with you and your parents. Whenever I see someone type :) on their phones or emails I will forever think of you! God bless you and your parents, Isaac

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  22. Laura and Mike, thank you for your honesty and sharing this personal heartache with us. You are an inspiration on what it means to seek positivity when most of us would just curl into a ball and not want to face the day. Thank you for that reminder.

    Laura - Bennett told me he wants to have a date with sweet Avery. He might even share his favorite teddy and books with her if she doesn't think he has cooties. ;) Also, not sure if you are going to keep working at the school but if so, and if you ever need a break or help in the classroom, let me know and I'm more than happy to come up to school. Sending love and prayers your way!

    -Laura Anderson

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  23. Hi Avery, you are such a strong and beautiful little girl and have an amazingly strong support system (mom, dad and grandparents). I have a little girl who's 4 months old, and it breaks my heart thinking about what you guys must be going through! You and your family will be in my thoughts and heart!! You have a great positive perspective on this and bringing awareness! I think the bucket list is a great idea and people have come up with some great ideas!! I would def say do the foot and hand prints you'll want to have them to cherish and it'll be sweet to see her feet and hands grow! *hugs* to you and your family!!

    Love
    Amanda, Steven, Aidan and Hailey!

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  24. Avery, I am amazed and inspired by the bravery your parents have and it breaks my heart that they are faced with losing you to SMA! I have known your Mommy and her family since we were little girls and Facebook has brought your story to me. Thank you for sharing your story in your blog, and for making it so informative as well as being very eloquently written. I have learned so much from you today, and regardless of how long or short your little life, I will never forget you and the difference I know your parents will make on your behalf! I have a suggestion for your bucket list – Run a 5k! Ask your Mommy and Daddy to push you in your stroller so you can cross the finish line with them. With a SMILE, Christie T. Perkins

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  25. Celebrate every holiday early and often, whether it's time for it or not! Maybe she can know the joy of Santa many times over, get tons of Valentines, dress up in many Halloween costumes, and play with Easter eggs in lovely cool grass. And I bet she'd want you to find every single one of her ticklish spots. And snow--gotta feel snow at least once. And kitten fur.

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  26. You are such a beautiful girl. I bet mommy and daddy would love for you to make them their very own plaster or cement square of your hand and foot prints with your name just like they do for the stars in Hollywood! Hugs and kisses precious baby girl! Prayers for you and your family!

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  27. What an amazing gift your mommy and daddy are giving the world by sharing their beautiful honesty, faith and love for you. You are such a gorgeous girl, Avery, and I'm glad you celebrated your first Easter in big style with bunny ears!

    A friend of mine from Baylor (Teya Miller) shared your bucket list on Facebook so that I could meet you and your amazing parents and grandparents. It just so happens that a friend of mine from high school has a niece named Scarlett with SMA, too. If your mom and dad would like to read Scarlett's story (she just turned 1) and get in touch with her mommy and daddy (they live in Illinois), her website is: http://wishesforscarlett.com/

    I'm thankful for a beautiful girl like you that is not only educating the world about SMA, but also teaching us to slow down and appreciate every single day we are given. You and your family are in my prayers, Avery!

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  28. ...what you CAN DO....not what you can't. We are not made for defeat.

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  29. Dearest Avery~Thank you for sharing your story! I am at a loss for words right now but I just wanted you to know that you are one brave, strong and lucky little girl! My son was born with a congenital heart defect and had open heart surgery at just 7 days old. His strength and courage was amazing, as I am sure yours is too! I will continue to send thoughts and prayers to you and your family as the days, months and years go by! I hope and wish you the best and if anyone should live life to the fullest, it should be you! God Bless!

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  30. My Sweet Baby Avery "Blue Eyed Princess",

    I am sorry the first three months of your life was taken away from us, but you have taught your Aunt Jenny a very valuable lesson. I have learned from you that time on this earth is too precious and we should live everyday as if it is our last. We should always make time for our family, give monster hugs (hugs so tight neither one of you can breathe), never say goodbye, but instead say "see you later", never leave mad at each other, always smile and laugh when your with them, and never consume yourself with one thing in your life that keeps you away from the people that you love. There is so much I would like to tell you, but then I would be talking too much and your dad hates when I blabber. Quote from your dad, "Jenny can you get to the point already?" Oh how I hate when he tells me this, but it is true sometimes less is more, but I'm never one to listen so I just keep talking. You can't tell a story unless you tell the whole story, right? One more thing before I get on with it. When your dad told me your middle name was going to be Lynn, my only words were "Oh." Not because I didn't want you to share a name with me and your Nana Sandi, but because I never really liked my name. This is because I never knew what it meant. I just looked up "our" name and it has two meanings, one in English and the other in Welsh. "By a lake" is Welsh and "pretty" is the English meaning. Now I know why our parents named us that. You are a pretty person inside and out and it has been and will continue to be an honor to say I am your Aunt Jenny. I love you my Blue Eyed Princess!


    Your cousins and I have put together a list of things we would love to do with you in addition to all of the memories that we will make with you from your mommy and daddy's list.

    * learn to write your last name
    * correct someone when they pronounce your name wrong "Canawhat", Canawho", no Canahuati duh
    * bath time with your cousin Gabby - Gabby told me she will only do it with you if you promise to splash water all over the floor and get in trouble with her
    * play football with Johnny, George, and Gabby - girls against boys
    * have your first drink, but don't do anything crazy like your mom would do
    * go to a haunted house
    * learn to talk with your mom and me - I'm sure your dad won't mind if you are telling the "whole story"
    * play softball on my team
    * mow the lawn
    * purchase your first home
    * apply for your a credit card
    * visit the house your dad, myself, and your Aunt Kristy grew up in
    * watch a rated "R" movie, with me and your cousins, but you can't tell your parents
    * play barbies with Gabby
    * learn to swim with the BEST swim teacher around. Your Nana Sandi.
    * be there when your cousin Jonathan makes it to the NFL.
    * do stand-up comedy with your cousin George
    * invent something
    * take out the trash for your dad
    * receive an allowance
    * make straight A's on your report card
    * throw a tantrum in the middle of a department store
    * make a mess eating at a restaurant
    * gossip with your friends (I don't like gossiping, but I will do it with you if you want)

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  31. Once again, I'm taking too much. I tried to send my message and it told me I could only have a max of 4,067 characters. Who does that? Here is my continued list....

    * watch the Academy Awards
    * watch The Challenges with me, your dad, and Aunt Kristy
    * DVR your favorite show
    * change the channel when your dad is watching sports
    * erase his "Fantasy Football" account
    * break your moms favorite lipstick (I know you like lip gloss, but she can't break that, so buy some lipstick)
    * write on the walls
    * break something
    * watch the movie Annie and learn to sing ALL of the songs with Gabby
    * make a mess of the books your mom so sweetly put on the wall for you (I told her it wouldn't be long before the wall display of books went from being a pretty display to being completely destroyed, so I need you to rip the books off the wall)
    * get emberrassed when you have your first crush
    * be in your first play at school
    * play an instrument

    I love you Aviator, BrAvery, Blue Eyed Princess, Pookie, Baby Avery (That's Gabby's nickname for you). Man you have a lot of nicknames

    Always and Forever,

    Aunt Jenny and your cousins Gabby, George, and Jonathan

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  32. Laura and Mike - your wisdom amazes me. You have taken a heartbreaking experienced and turned it into a story that can teach us all. We wish you a world of strength and serenity for your difficult journey ahead. You have a wonderful family and Avery loves you more and more each second. - Nina

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  33. You don't know me, but I know someone who knows you who shared your story. I live in Austin, and if there's any way to help you accomplish anything on your bucket list or a way to donate to help you do something on your bucket list, please let me know. I have a 5 month old baby girl, and I wanted to thank you for the reminder to appreciate every day because it is a gift. My email address is deena dominguez at g mail dot com. Just string it all together. You and your family are an inspiration.

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  34. I'm Alex and Gavin Mott's aunt, and I was so sad to hear about Avery. I have a 6 month old little boy and I can't imagine what your family must be going through.

    Your story is really an inspiration for me to keep working hard on my PhD, which has it's roots in the SMA basic science research field. I hope that your story can help to bring awareness and funding to support research like ours so that one day, hopefully soon, we will find a cure.

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  35. Dear Avery,
    I do not know you, but I saw your bucket list on facebook through a friend's post. I too have SMA...I have type 3. From reading your blog, you have an amazing family and I think your bucket list sounds like SO much fun! :) I know how hard life can be but it's all about what you make of it. If you need help with ANYTHING on your bucket list you let me know!!!
    I wish you and your family all the happiness,
    C

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  36. Avery, Laura, and Mike -

    The Harrisons are eager to help you with your journey. We know the love and joy created over the course of this quest will carry forward and ease the heartbreak. Please let us know how we can help (any time, any where), and be sure to let us know when Avery gets to spend her day in "Quinndergarten."

    I am sure the entire Horn Dads Club would be delighted for Avery to come play a hand of poker with us at the next monthly game, and cross another item off her list. I see a Royal Flush in her near future.

    Bless you, and know that you are in our thoughts and prayers. And thanks for providing a reminder that we all should give our kids an extra hug every chance we get.

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  37. Dear Avery,

    Your bucket list so far is awesome. Make sure your Mom and Dad put you in front of the mirror often so you can laugh and talk to that beautiful girl you see.

    Reta Daugherty

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  38. Dear Sweet Avery,

    My cousin (Jessica Huey) went to high school with your mommy and I heard about your story. It has touched my heart deeply and know even though your little life has only begun you have already touched so many people! You are a very special soul that God has put on this earth with a big plan in mind. I recommend your mommy and daddy buy you two books for you....The Little Soul and the Sun By Walsch, Neale Donald/ Riccio and The Little Soul And The Earth Im Somebody! By Walsch, Neale Donald/ Riccio. These two books hold a special place in my heart and helped me through when I was trying to start my family but kept having miscarriage after miscarriage due to chromosome problems. It helps you understand God's big plans for our souls and why bad things can happen to good people. I send you and your family lots of healing energy. Know you are surrounded by many angels who are here to guard and protect you! Though you may be small your heart is bigger then anyone I have ever known :) Angel hugs and Fairy Kisses...Shannon Yancy

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  39. part of your bucket list..... be princess.... dress up as princess, smile sweet girl, show your mommy and daddy that sweet smile you have. They will forever remember it. I know I remember my baby's.

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  40. Mike, I haven't seen you in years but I just read this via Ashley (nee)Wilcox. I am so very sorry. And you and your family are so very amazing. I wish you all the best and lots of love and hope and fun with Avery.

    Vanessa LaWare

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  41. Michael, I'm so sorry. Avery is just precious. She has such a sweet smile. I think experiencing a sunset and a sunrise with her somewhere quiet would be nice (a beach, or on the lake). Many thoughts and prayers for Avery, you, and your family.

    ~ Janita

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  42. Go to a Star party (http://sanantonioastronomy.org/calendar/ or http://mcdonaldobservatory.org/calendar)
    Go to Disney World
    Watch a hot air balloon festival (http://www.hotairballoon.com/)
    Visit Lost Maples to see the colors of fall on the trees (http://www.tpwd.state.tx.us/spdest/findadest/parks/lost_maples/)
    Go to an airplane show (http://www.wingsoverhouston.com/)
    Go to the Magic theater (http://www.magiktheatre.org/)
    Go to the San Antonio Fiesta River Parade (I got tickets with your name on them... April 23rd)
    Make snow cones
    Eat cotton candy
    Watch every Disney movie
    Plant a tree
    Be an extra in a movie or tv show
    Ride on a train (http://www.austinsteamtrain.org/rides.php#npflyer or http://www.sazoo-aq.org/general/zootrain.html)
    Go to Natural Bridge Caverns (http://m.naturalbridgecaverns.com/)
    Go to Natural Bridge Wildlife Ranch (http://www.wildlifetexas.mobi/)
    Visit Enchanted Rock
    Visit Pedernales Falls State Park (http://www.tpwd.state.tx.us/spdest/findadest/parks/pedernales_falls/)
    Visit Big Bend National Park
    Make a sidewalk chalk drawing
    Hang out in a tree house
    Visit Divine Acres (http://www.devineacresfarm.com/)
    Cut down your own Christmas tree (http://www.devineacresfarm.com/christmasFarm.php)
    Visit the Alamo
    Visit Redwood National Park (http://www.nps.gov/redw/index.htm)
    Visit the White House
    Watch the San Antonio River Holiday Parade and Lighting Ceremony (http://www.thesanantonioriverwalk.com/events/ford-holiday-river-parade-lighting-ceremony/)
    Play at Morgan's Wonderland (http://www.morganswonderland.com/)
    Get ears pierced
    Go to prom
    Have pet rock
    Play with Legos
    Make a mess with glitter
    Eat (I mean play) with Play-doh
    Go to a driving range to hit golf balls
    Join a swim team

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  43. Dearest lil Avery ,
    What a brave and beautiful princess you are. God put you here on Earth to teach many people the value of life ! That I know for sure, and consider your lesson taught. I've been sitting here trying to think of something to add to your bucket list, something super girly and lovely. I got it, tell mommy and daddy to go buy you a frilly tutu, some ballerina slippers and have you a lovely daddy / daughter dance. Mommy, take too many photos, you will never ever have enough of those. I know this will make for some wonderful memories. My daughter dances and she absolutely loves it, smiles everytime ! Be a ballerina for a day or a week whatever suits you. As for your mommy and daddy, they clearly love you far more than you will ever know, that is just so apparent. If there is an aquarium anywhere close to home, go visit it, go sit and watch dolphins swim back and forth, it will bring so much peace (and I'm sure many giggles).
    Lot's of love and squishy hugs (as my son absolutely loves) from Texas !

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    1. She needs to jump on a bed and I can make that happen!!! Also, I can make her a tv commercial star! I have a commercial shoot for the March of Dimes in the next week or so. Just say the word!!
      Cole Mark - Emma Mark's mom

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  44. Sweet Baby Avery,
    I have never met you before but I am friends with Erika and Lee who are friends of your parents. I happen to live in Los Angeles right near Hollywood and I see that's on your bucket list!Please tell your parents that I have an extra bedroom and bathroom in a neat little bungalow on top of a big hill that even has a view of the Hollywood sign. If you would like to come visit with your parents and see the stars on Hollywood Blvd., visit Universal Studios, go to Disneyland, go to the beach, go for beautiful hikes in the hills (we can even hike in a forest to waterfalls), shop on Rodeo Drive and hang in Beverly Hills and just be an all-around California girl for the weekend, my house is open!! I would love to have you and your family and help you accomplish some things on your bucket list! I might even be able to get you in a film! ;-)Please tell your mommy and daddy that they can contact me at mandalou1 at yahoo dot com so we can see if we can make something work. Stay strong little one and know that we are all praying for you!! What fun things you have ahead of you! Sending you a lot of love, hugs and kisses and some warm California sunshine. XO Your new pal, Amanda Meyer

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  45. Precious Avery,
    I too have never had the pleasure of meeting you or your amazing parents. I just learned of you through Battle4ACure's facebook page and I am so glad I did. :) You are such a beautiful baby girl and have been so blessed with a wonderful family who loves you so much. I feel blessed to get to know you even if only through your blog. ;) I am so sorry for what you and your family are going through, it breaks my heart. But to see the love you have for eachother and the obvious joy in your smiles blesses my heart. I have 3 children, my youngest daughter, Millie, just turned 2 and she says you are "so cute!" ;) You will have so much fun doing all of the things on your bucket list, don't forget to make time for lots of snuggles with mommy and daddy, those are the best! ;) I keep trying to think of what you could add to your list and the only things I can think of that others haven't already suggested are: help mommy bake chocolate chip cookies (don't forget to taste the dough!), and find a great photographer to take you guys out and capture some beautiful family pictures (get all of your family to go!). :) One thing your mommy can do too, is save all of your favorite clothes, once you have outgrown them of course, and make them into a quilt. I think I originally saw this on Pinterest and wish I would have thought of doing it years ago with my kid's clothes.
    I will be praying for you and your family sweet girl! I can't wait to see pictures of you and your parents doing all of these fun things together. May God bring you all peace, comfort and strength! <3

    Sarah

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  46. Dear Avery,
    Tell your mommy and daddy that you already crossed off another item on your bucket list....and that is make the world a better place by touching the lives and hearts of those you both know and have never met - like me! May God continue to bless you and your family - I only pray for one day my 4 little boys touch the life of just one person in their lifetime the same way you have touched the lives of so many in such a short lifetime! Oh and don't forget, every little girl needs 3 things in her lifetime....1. a princess tiara 2. a really cute purse and 3. a cute tutu - and don't forget - learn to wink - it's ok to do it with both eyes when you are a baby and have someone teach you how to give a bunny kiss with your nose - or as some call it, an Eskimo kiss!

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  47. Dear Avery, you sure are a special girl and you have some very special amazing parents and family.
    Here is a list that my daughter Haley and I came up with.
    take a bath and make a bubble beard.
    be the flower girl in the vow renewals of your parents under the wedding tree in colorado. (I think that's where it is)
    make sidewalk chalk art
    splash in rain puddles
    dance in the rain
    watch matilda (Haley's favorite movie)
    Hand tools to Dad while he fixes something
    Talk your parents into getting a pet
    watch the northern lights

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  48. Avery, get your mom and dad to get some pictures of you in the bluebonnets - a must for any Texas baby! Maybe you can go to Brenham and stop off at Blue Bell for an ice cream cone after the pictures.

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  49. Hey Mike- haven't talked to you since high school, but I saw this on Facebook, and I am so sorry to hear about the news. The hope, optimism, and love you and your wife are sharing with us all through the blog is inspirational. I shared your story through my Facebook page. And if there is any way to donate to Avery's Bucket List (like a fund or something) or to an SMA research group, please share. I am so sorry that you all have to go through this- sometimes life isn't very fair, but your strength and love inspires many. God is using you all- and hopefully, all of us collectively can make this viral and Avery can give a face to SMA. Much love and prayers to you and your family!- Jessica (Huey) Simpson

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  50. I think Mommy and Daddy need to get the book "There really is a Heaven", it is written by a five year old boy. You could READ IT to Avery and hopefully it will make you feel better when the time come. Paint Avery's nails a pretty Pink. Also, please tell Avery to "Never fly faster than her Angel can fly". Give her all the love you have and more. Zillions of hugs and kisses.
    Sandi Doemel - Appleton, Wisconsin

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  51. Avery,

    Your Mommy and Daddy are our heroes! We can't imaging what your family is going through, and to share it with everyone is just amazing! Know that all of you are in our prayers through this difficult time. Enjoy the time you have and make the most of every moment.

    Things to add to list: Houston Zoo, TX Bluebonnets pics, Tx State Railroad Train Ride (Polar Express is the best and your Mommy and Daddy have to wear their pj's too). Last but not least- when your first birthday comes- tear into that cake like nobody's business!!!

    Mike and Laura- Keep your heads up! Cry when you need to cry, laugh when you can, and enjoy every moment with that beautiful angel God gave you! Seeing what you're going through makes everything we went through with Austin so small in comparison. Thanks for sharing your family's story!

    Ethan, Aurora, and Austin Resuriz (Melissa's cousin and family)

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  52. Mike & Laura,
    I am truly sorry to hear about Avery's condition. I think Avery definitely needs to swing through Harwin and shop for car stereo equipment. Her father will have plenty of stories to share during the shopping experience. Avery should also see an Astros game to share in the childhood passion of her father. Thanks for sharing Avery's story and giving us distant friends an opportunity to share our love and prayers. We will always be here for the Canahuati's.

    Sincerely,
    Aaron and Emily Lane

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  53. I have a child wifb a disability and love your story. I have an idea for yoyr bucket list. Have mommy and daddy take you to the park, pack a kunch and have a picnic in this beautiful weather. Also try a swing.

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  54. To Avery's parents, I hope God gives you all the strength that you need to get through this. Your precious angel was a gift indeed. My heart breaks for you all. I hope you find peace and happiness through your journey. God bless you all.... ::hugs Avery::

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  55. Avery, my name is deb cloud and I'm a photographer in Deer Park just outside of Houston. I'd love to give you the gift of beautiful model shoots each month so your Mommy and Daddy can see all the beauty that is you - forever. Please have them contact me to set up these shoots. photosbydeb@sbcglobal.net

    deb

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    1. Deb that is so awesome of you, as I sit here in VA also a photographer I was thinking how I wish I was so much closer to them so I could offer the same thing.

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  56. Avery and family, our thoughts are with you. For your bucket list have Mommy and Daddy contact your local EAA group and find a member to take you up flying in an airplane! I promise you it is awesome. You need to become a Young Eagle!! Also, tell Mommy and Daddy to take you to WDW!! You need to meet Mickey Mouse, Minnie Mouse, and all their friends! You can have your doctor write a letter and take it to guest services and get a special pass where you won't have to stand in long lines to meet the special friends!

    Sending ministering spirits to you and your family.

    the Funk Family
    Carrie

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  57. Go to a mardi gras parade and catch a stuffed animal.

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  58. Hi there sweet little Avery! My name is Gina and my daughter Larkin Noel has SMA type 1 (and Down Syndrome). Guess what? She just turned 6 years old and is doing wonderfully!!! She is trached and on a ventilator but there are lots of kiddo's with SMA that just use Bi-pap and they are doing well too. We have a website www.larkielubows.com that donates to a wonderful foundation called Sophia's Cure to help fund important research to help find a treatment and/or cure for SMA. I also have a blog called Ginastreasures.blogspot.com I just post things that I'm doing in my bow shop and about my kids. I have 5!

    Also there are lots of SMA groups on Facebook if you haven't found any yet. Wonderful families dealing with the same thing that you all are. We were all told that our babies wouldn't make it to their 2nd birthday's but we are living each and every day one at a time and praying for a cure.

    Anyhoo...I am so glad that you are crossing things off your bucket list. It looks like you are having fun:)
    Take Care...lots of (((hugs)))
    Gina and Larkin Bish

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  59. My name is Lauren and I'm almost 30 years old now and I was diagnosed at 6 months old with SMA. At first they thought it was type 1 but the way it progressed it seemed to be type 2 or juvenile SMA. Over a 30 year life span, you can imagine all the stories I have and testimonies of God's miraculous interventions, I could not have made it this far without Him! Jesus, literally sustains my every breath. They also told my parents that I wouldn't live past the age of 2 but what do doctors know???!!!??? Only God can say when! I will be praying with all my heart because this is the calling that God has put on my heart, to see children and families delivered and set free from these kinds of devastating situations and to bring God all the glory. I personally am believing God for my own miraculous healing because He spoke to me about 10 years ago and told me that He had an appointed time for it to happen...so I am waiting and trusting Him completely with my life.
    Hebrews 11:1 "Now faith is the substance of things hoped for, the evidence of things not seen"
    Faith sees the invisible, believes the unbelievable and receives the impossible!

    If you would like to contact me I would love to share and help in any way I can. You can find me on Facebook as Victorious Nani lee www.facebook.com/Nanie82

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  60. Hey Avery, don't know if you would like these ideas, but here are some things that may be fun for you...play a game of softball, create your first colorful masterpiece!, find that perfect little black dress! Watch a scary movie and yell at the tv and my personal favorite guilty pleasure....sing your favorite song, off key and loudly for the whole world to hear :) oh yeah..one more thing...after your daddy daughter dance...maybe you can go on your first date and maybe daddy won't interrogate the poor guy lol (or maybe he will)

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  61. Avery - My name is Marshall, and I want to help knock off a few bucket list items! i'm getting married in Austin, TX in november, and I couldnt think of a better flower girl! My fiance and I would be honored to have you with us..and there will be lots of people there to help you get to 1,000 hugs and smiles

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  62. Hello Avery, Mommy, and Daddy,
    My name is, Brookanne, I too have SMA type 1. As well as my two brothers. None of us were supposed to live past two. I am 30, Tommy is 29, and Jeffrey will be 25 in May. All three of us have lived "normal" lives. We all graduated from Texas A&M University, and have careers.
    My family is a huge part of why the now know what causes SMA. I have so much I would love to share with you, but as you know I have limited arm strength.
    The MDA office often gives our number to families so they can call and talk to ours. I wish I could have you talk to my mom, but she passed away in December. I would love nothing more than to follow in her footsteps, and be there for families. I would love to tell you about growing up with SMA, or just be there to listen to your frustrations. You may ask me anything!
    I hope to hear from you!

    Praying,
    Brookanne
    214-289-6526

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  63. Hi Avery, Mommy, and Daddy,

    I just wanted to add a bucket list item maybe so your mommy and daddy can have you by their heart every day you are with them...here or not. I got these for Mother's Day one year and wear them every single day...

    www.prairiecreations.com

    It's a clay kit that is mailed to you and you make a fingerprint of Avery's and send it back. They turn it into a necklace. It's my favorite thing.I have my girls with me all the time...

    My daughter has type 1 diabetes and there is no cure. It is not fatal unless her blood sugar drops too low. I believe in hope though...so much so that I tattooed it on my back. I'll remove it when she is cured. I have hope that Avery has the best life possible...for as long as possible.

    Kimberly

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  64. You are all amazing!! Avery, you are beautiful!! An add to the bucket list...finger painting!! Get as messy as you can and let mommy and daddy enjoy cleaning you up in a bubble bath!! Another thing you guys should do together is play in the rain...even if just for five minutes! I love your family and I dont even know you guys. I have three kids...my youngest is seven weeks old. I'm sitting here with a headache and thinking bed time for my 2 and 4 year old needs to happen yesterday. Then I see this on fb and think I will keep them up later tonight. Your family has made an impact on mine. Kisses and hugs to you all!!!
    Love, Lauren, Pete, Jackson, Zachary, and Riley

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  65. Here's another item for your bucket list - meet another Avery! You've got a lot of living left to do!
    XOXO,
    another Cubs and Packers fan named Avery :)

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  66. Prayers for your baby girl!
    Another fun things to add to your Bucket List if it's not on there already : plant seeds, flowers, a tree, etc. Then watch them grow. This is something my daughter loves.

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  67. Avery, you are such a brave and beautiful little girl. We will make sure you are never, ever forgotten. Cindy Lartigue

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  68. Make hand and footprints in a kit to be framed. Your parents will have it forever. Your a beautiful little girl and the world will make sure you are never forgotten. Love, Cindy Lartigue

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  69. Dear baby Avery,

    Tears are literally rolling down my cheeks right now - both because it breaks my heart that you have been diagnosed with this terrible disease, but also because you are truly inspiring! (So cross that off your bucket list baby girl - you continue to be an inspiration.) And even though I'm crying now, if I ever am lucky enough to meet you, I will smile for you. :)

    You ARE truly lucky and blessed in that you have such amazing parents and extended family. I will pray for all of you and hope you are able to accomplish all you wish to do. What a wonderful gift they are giving you by celebrating your life every moment that you're here and by helping the world learn more about SMA so that maybe someday there will be a cure.

    *My hubby and I would love to add to your bucket list:

    -Go fishing with mommy & daddy (the "grands", aunts, uncles, cousins and anyone else is welcome too).

    -Go to a Christmas parade and get some candy as they toss it out to the kids.

    -Sit on Santa's lap.

    -Ride a merry-go-round.

    -Finger-paint with pudding.

    -Build a sandcastle at the beach.

    -Watch fireworks on the 4th of July.

    -Go to the zoo.

    -Fly a kite.

    -Eat an ice cream cone.

    -See a rainbow.

    -Have a sleep-over or slumber party.

    -Make s'mores around a campfire.

    *My kids wanted to add some things too:

    -Say your first word.

    -Draw silly faces on hard-boiled eggs (no need to wait for Easter).

    -Build a snowman.

    -Go sledding.

    -Play with mommy's make-up.

    -Dress up for Halloween and go trick-or-treating.

    -Meet Mickey Mouse.

    -Be in a flash mob!

    -Play with pots and pans (they make great instruments!)

    -Watch a caterpillar turn into a butterfly (with the kits they sell at the toy store).

    And last but not least: giggle a lot!

    Lots of love to you baby Avery and your family - from Gianna, Dave Bridget, Hannah & Noah ♥

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  70. Sweet Avery, one day I pray, that before you go to sit on Jesus lap you will be able to splash in a puddle after a warm rain with your Mommy and Daddy and the rest of your family. It really is a lot of fun...<3

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  71. My daughter Madison has SMA type 1 and is 15 years old. She is not trached. She has followed the noninvasive respiratory protocol and amino acid diet that has helped so many kids with type 1 live longer than 2 years. My daughter is very happy,loves life and she will tell you she does not want to die. My prayers go out to you. Please feel free to contact me if you have any questions or need someone to talk to. www.miracleformadison.org

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  72. Dear Laura, Mike and Avery,

    I was so sad to hear the news and yes I cried. I am so happy you have started this blog and the Bucket List is Awesome!! I will keep all of you in my prayers. Avery is beautiful and all the memories you are making you will cherish forever. Keep smiling! Love, Rosalind (Ashley Lent's aunt)

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  73. Avery, you remind me to thank God for my healthy babies. There's no rhyme or reason why I should get to be such a lucky mommy or why others should have to suffer so but please know that my heart goes out to you, i shed tears for you, i ache for you. i pray that somehow your mommy and daddy's pain can be eased by knowing we care. Please give them our love and hugs and kisses. You are such a brave, little girl and tomorrow when my own AJ and Addison wake up i will share your story with them and hug them oh so tight and tell them how much I love them.

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  74. Hi Miss Canahauti,
    I miss you and I love you. I can't wait to meet your baby. I want to read to her when I am home this summer.

    Kate

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  75. Dear sweet Avery. You are a blessing from God. I have never heard of this disease until I found your blog on Facebook. I have 2 boys (11 and 2) and I couldn't even begin to imagine them having to go through what you have to every day. I wish there was more that I could do, but I will pray for you, your family, and a cure for this disease every chance I get.
    For your bucket list, I suggest the following:
    -Be in 2 places at 1 time (mommy and daddy can straddle you on the state line)
    -Get Married
    -Write a poem
    -Make a music album (sing your favorite songs and put them on CD)
    -Have Children
    -Pet an exotic animal
    -Meet someone famous
    -Ride a bike
    -Visit a foreign Country
    -Have your picture on a bilboard
    -Hold a moon rock
    -Find a Cure for SMA

    I don;t even know you or your family and I love you all with all of my heart. It really breaks my heart to see someone so young and beautiful have to go through all of this. God bless you all.

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  77. Mike, I know I haven't seen you in many years,but thanks to Facbook we are able to connect to the world in seconds. Our family and church are praying for your strength along with you & your family's comfort. You guys are an inspiration to parents all over the world. We will SHARE your story the best we can, and give your little one an extra hug from us. Amy Navarro-Johnson

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  78. I just came across your blog on Facebook, and am heartbroken to hear your story. I hope you & your family realize that there are so many people praying for you. I wish I lived closer so you could be my flower girl in my September wedding and cross something off your list.

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  79. Avery, you are so strong and beautiful and please keep up the hope! I currently work with a little girl who was diagnosed with SMA Type 1 and will be turning 4 in August! She has defeated the odds when all odds were against her and Avery can as well! I am not sure if you are familiar with the Families of Spinal Muscular Atrophy but it is an amazing place to connect with other families and a great resource overall (see link below). We will continue to fight against this devastating disease but in the meantime, keep up the fight baby girl...you can beat this!

    http://www.fsma.org

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  80. Avery:
    Thanks for sharing all of you adventures! I can't wait to be a part of achieving these goals with you. Aunt meg has a few more ideas for silly outfits for you to wear!
    Love you and your mommy and daddy!!

    :-)

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  81. Hi Avery,This is your Uncle "Haseeb"! Your mom & dad are one of the nicest couple I know and you are the most precious, beautiful princess I have ever seen. That's makes you very special in our hearts. I want you to know that Uncle "Haseeb" & Aunty "Zoey" loves you and always love you like everyone else. By the way my little son "Adam" is blowing a kiss to you. :)

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  82. I am forwarding your blog to the ellen show as I am so touched with your story! You truly are an inspiration to others!

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  83. This is amazing.
    Avery - your Mommy and Daddy have found such a wonderful way to celebrate your life and share your story with others. You have truly inspirational parents and I am so touched by the strengh they have in giving you every wonderful experience life can bring.

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  84. Okay sweet Avery... I just pinned your story on Pinterest! If there is any place that can help you spread the word about SMA quick, THAT is the place!

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  85. Avery,

    You definitly are a inspiration to others and you have such wonderful parents and I definitly send you kisses and hugs and hope that we all can learn about SMA and hopes that they can find a cure. You have such a pure and gentle soul and you and your family are in my prayers. I am sure that you will experience lots more wonderful things in your life.

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  86. You are so special. I read about you on baby center groups Nov 2011 baby board.....I will pray something good hapens to turn this all around

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  87. You have amazing parents who are incredibly inspiring. Thinking of all of you and sending strength and smiles. Much love to all of you.

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  88. You are a sweetheart, Avert, and you inspire me! Thank you for sharing your story.
    -Rachel in Maryland

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  89. I just found your blog and can't wait to follow along as sweet Avery marks items off of that bucket list!!! :-) Praying for your sweet family! Also, what part of Texas are y'all from? I just moved from Texas to Washington DC! :-)

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  90. Hi Avery, I wanted to let you know that you have another SMA sister in Houston. My daughter, Maya, is Type 2 and was diagnosed right after her first birthday. She is truly a blessing to our family as I know you are to yours. If your parents would ever like to talk to another family, they can contact me (or through Cooper's mom!). Maya has had a few opportunities to promote awareness herself, with the local MDA chapter. In fact, she is on the MDA Houston firefighter stickers this year in case you get to see one. And if you read this before Saturday, tune into KPRC's Saturday morning show and you may get to see Miss Maya for a story they are promoting for the MDA.

    p.s. I am amazed and also so grateful about how many people you have already reached since your blog started just 3 days ago. What a beautiful little girl!

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  91. I'm following this story everyday and passing it on to others. I love your family and baby Avery. You are amazingly incredible people and what this world needs more of. 3 items for your bucket list:
    From Me- Go to a cirque du soleil show
    From my Husband-get a puppy
    From our son Aiden (only 10 months but I know he'd approve b/c he's doing this already) play guitar and piano and rock out
    God bless!

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  92. Dear Avery,

    I had never heard of SMA before your Aunt Jenny told me you had this disease. How smart of your Mommy and Daddy to create a way for you to share your story with the world. Your blog will help draw so much awareness to SMA. I can't even begin to imagine having to go through what you and your family have to every day. I wish there was more that I could do, I will pray for you and your family and share your story with as many people as I can.

    Here are a few fun things I've come up with for your bucket list!

    Dance in the rain with Mommy and Daddy
    Watch a fireworks show
    Eat cotton candy
    Eat a snow cone
    Eat breakfast for dinner
    Eat dessert before your meal
    Wear a tiara
    Get your ears pierced
    Take a bubble bath
    Make a snow angle with Mommy and Daddy
    Play with play-doh
    Play hide-n-seak
    Play peek-a-boo
    Roast marshmallows around a camp fire
    Sleep in a sleeping bag
    Have a picnic
    Feed ducks bread crumbs
    Make a sand castle
    Make mud pies
    Catch fire flies
    Hay Ride
    Build a Bear
    Give and receive Eskimo Kisses
    Go to the zoo
    Ride a train

    God Bless you and your family, Avery!

    Lots of Love Dominic and Lara Valdez

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  93. Losing a child is the hardest thing to go through. I myself had to deal with losing twins. If there is ever a Bucket List item I can help with. I'm there!

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  94. Avery, and family,

    You are so lucky to have a mommy, daddy and grandma and grandpa who love you and want to make such wonderful memories with you. I will pray for you and hope you know there are lots of people like myself who are thinking of you. I'm a mommy myself and the love of a child is the most cherrished gift I have ever had in my life. Hugs to you and your family.

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  95. Avery, you are the prettiest little girl I've ever seen. I will keep you & your family in my heart, thoughts & prayers daily. You're such a blessing to us all! I cry for your family as tears roll down my cheeks. May God keep his loving & strong arms around you. As my family says from the heart, I Truly Love Yal All The Way To Heaven! If I can help you or your family, please contact me @ tamylyon2@gmail.com

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  96. As you can see we are all working so hard towards helping my granddaughter experience as many of her bucket list items as possible. Thanks so much to one and all who have so sweetly contributed to this mission of love. My little Avery is quite the warrior,much like her sweet mother. She worked so so hard yesterday at her physical therapy and watching her made me realize that whatever other problems that I have ever had pale in comparison to what this sweet innocent 5 month old is facing. We will continue to follow her example of bravery and will celebrate each and every moment of her life and we will all be forever enriched with her love and spirit. I love you so much Avery-Gpa

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  97. Avery,my heart is broken for your family because no matter what happens you will have a life blessed beyond measure. You and your family are in my prayers. Becky Neese

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  98. Hi Avery,

    My mom and I wanted to say hi. I am not as old as you yet, but I really admire your bravery! You sure help keep things in perspective for so many, that's a pretty big task for a baby, but you have a wonderful mommy and daddy to help! You are so pretty and you are so lucky to have such a wonderful family! I will be praying for you and your family!

    Love,

    Juliana and my mommy

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  99. My mommy held me a little tighter after reading your blog. I look up to you because your older and wiser :)

    Jackson, 4 months

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  100. Avery, You are such a beautiful little girl, and you are obviously surrounded by so much love. I will keep you and your family in my prayers. I will also try to follow your example and embrace life.

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  101. Hi Mike, I am so sorry to hear this news about your baby girl. I will be praying for you and your whole family. You and your wife are doing a really amazing thing. I have no words.

    Jordan Witson Fronk

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  102. Dear Avery, you and your families are my heroes. You inspire me to live life to the fullest and enjoy every second of it. GOD is great and he will always be by your side. God Bless you all!

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  103. Thank you for sharing your story. I have posted your blog to Facebook and Pinterest, hoping to draw attention to your blog. I homeschool my eight-year-old son, Taylor, and today, the biggest of my worries was making sure his returning fever was down and that he had enough fluids. In crying while reading your blog, I am thankful that this was the biggest of my worries. You all are so courageous. Thank you for choosing to value Avery's life and being thankful for the time that you have to spend with her. My prayers are with you, and I thank God for His perfect will, praying that He will intercede for Avery. He has already shown you and her how much He loves her through the outpouring of encouragement you have received and the amazing spread of Avery's story in such a short period of time. I thank the Lord in advance for what He is going to do for Avery and through Avery. I love the humor in your blog too! Every day, I will be following. And, if there is something my family or even my students can do (I am a youth pastor), we will be honored to help. Thanks! kristay8372@yahoo.com

    Bucket List Items:
    Be publicly dedicated to the Lord or baptized
    Vote
    Brush my teeth
    Braid my hair
    Beg mom and dad for a phone
    Hold my future brothers and sisters
    Take the blame for what my brothers or sisters did because I am the oldest
    Have dad tell my date to bring me home by 9:00PM
    Visit the Coca Cola Museum
    Find a four-leaf clover
    Make a clover necklace
    Wear and eat a candy necklace
    Wear a ring pop
    Break a pinata
    Make popsicles
    Go on a treasure hunt
    Use sidewalk chalk on the driveway
    Play hopscotch
    Be in a parade
    Go to a drive-in movie
    Fly a kite
    Make a paper airplane
    See fireworks
    Find a bird's nest
    Make a birdhouse
    Jump off the diving board
    Run in the sprinklers
    Have a pillow fight
    Make a fort
    Wear mom's high heels
    Put a puzzle together
    Make a balloon animal
    Get a farmer's tan
    Get my first haircut
    Ask mom and dad, "Are we there yet?"
    Finger paint
    Color in a coloring book
    Break curfew
    Write a book
    Raise my hand at school
    Do a push-up, even if it's a "girly" one
    Do a sit-up
    Play freeze tag
    See the Grand Canyon
    See Niagara Falls
    Play checkers
    Know what happens at Grandma/Grandpa's, stays at Grandma and Grandpa's
    Tell mom and dad, "You never let me do anything I want to do!"
    Have a family reunion
    Crawl
    Shake someone's hand
    Bake cookies
    Lose my voice cheering with Daddy at a ballgame
    Play an instrument
    Meet Winter, from Dolphin Tale

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  104. Avery, I love your blog sweet girl- makes me laugh and cry at the same time. Praying for you sweet girl and your remarkably strong family.
    I would like to try to make Saturday April 21st a day of prayer just for you baby girl! I've made a post on my blog to try to get people to sign up, but you tell me if that doesn't work!
    You are in our prayers and our hearts- crying for you and smiling with you!
    All my love,
    Barbara

    http://myunplannedblessings.blogspot.com/2012/04/prayer-for-avery.html

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  105. Dear Avery,
    You are a beautiful, bright sweet sweet angel. and every moment of every day spent with mom and dad are cherished. Ur story has touched my heart in more ways than one. And i will think and pray for you all the time. Live every moment like it is your last, you are loved tremendously.

    God bless, big hugs and kisses, you strong strong baby.
    and you parents are so courageous and strong, and i am so happy they are loving and enjoying every moment and experience with you.

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  106. I saw this on pinterest earlier today. I don't know if this would be something that y'all would find fun, but it might be easier than carrying her in a pool. She could lay on this on her back and kind of feel how the water moves around her. Best part, you can make it any size you need it! Maybe even add glitter to the water for her to watch when she isn't laying on it. Anyway, I saw this and thought I would share it with you.

    http://themommiesmademedoit.blogspot.com/2012/03/giant-squishy-sensory-bag.html

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  107. My husband and I are curently stationed in Germany. I've kept up with your story. I have a 5 month old and this story has just touched our hearts. We would love to send her something special from afar. How could we go about doing this?

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  108. You should make a tumblr as well :)
    I love watching you and your family.
    Maybe even make some vlogs on YouTube to help spread the word through the YouTube world.
    Once you start awareness on YouTube it will spread worldwide :)
    I wish you and your family the best <3

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  109. Avery,

    I heard your parents talking on 104.1 KRBE this morning about your condition and your story. I was in absolutely awe of the undeniable strength they both show for you, especially when I know their hearts are also breaking inside. You are very lucky to have such brave parents that love you so unconditionally as they do!

    Hearing your story instantly pulled at every string of my heart. As difficult as this journey has and will continue to be going forward, know that I will hold you and your family in my thoughts and prayers. For every tear, I pray there is an even bigger smile to offset that pain.

    I look forward to joining you on this journey of checking off that Bucket List. Although we may never meet, you've inspired me and undoubtedly made an impact of my life. Thank YOU!

    All my heart,
    Alicia in Houston, TX

    PS. Looks like your parents have a lot of fun planned ahead for you... Remember to smile! :)

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  110. Avery,
    I heard of you this morning on the radio and you have since been on my mind. I would love to help scratch off that bucket list.

    I emailed Ellen as well as other friends and family members in hopes she will she your amazing story and make a place for you on her show! Then you can scratch off meeting a celebrity to help spread the word off your list. My hope is that she will get an abundance of emails from people :)

    My love and prayers go to you and your amazing family. Thank you for sharing your story. You truly have touched my heart

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  111. Dear Avery, it was so nice meeting you today. You have been a blessing to so many. Your mommy and daddy ate very lucky that you chose them for parents. I didn't read through all of your post so if I repeat what someone else has said then I guess great minds think alike. Ask your mommy and daddy to keep all of your very special pieces of clothing and take a small permanent marker and cut a square and write on it something special that happened the day you wore it. When they have a lot of squares make a beautiful quilt to be cherished forever. If there is a lot left over they can make another one for another special person to you. I wish I had done this with my kids.. There's nothing like looking back at something my kids have worn and remember how special that day was. Sweet pea you are in my prayers... Huggs Kathy. In Michigan

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  112. Prayers for you, Avery. God bless you and your family! God love you and all who suffer from this! I am entrusting you to the Divine Mercy of Jesus!

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  113. I saw this link from "girl & a glue gun." I've been crying reading your blog, and feel so sorry for the impending loss of your precious angel. You are such a beautiful family and I can feel the love you have for each other and especially Avery. I can see she is such a pure, wonderful baby - and such a TROOPER! I can't imagine how hard it must be. I want to give her a big squeeze and a kiss.

    This is a beautiful & very short video - I'm so grateful that death is not the end and that we can be with our families forever. http://youtu.be/JiRc84kihRM

    Also, I think meeting a puppy and a kitten and maybe getting some wet, sweet kisses from them. ;) Riding a horse is thrilling too - my nieces and nephews always loved it when they were babies, & I'm excited to try it out on my own daughter when I get the chance. Seeing the sunrise or sunset on a mountaintop, going to the zoo, and watching a live dance or show are some ideas.

    You're all inspiring! My prayers are with you.

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  114. Dear sweet Avery,
    I would love to help you with your bucket list! I'm a photographer and would love to give you your photoshoot! Have your mommy or daddy email me so we can chat about it :) You are such a sweet blessing to this world and I hope that we can all help you get the word out about SMA!
    Amie Reinholz

    info@amiereinholz.com
    www.amiereinholz.com

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  115. What a sweet little angel. You have a very strong mommy and daddy sweetheart. I know you'll always watch over them and continue to give them strength once you are in Heaven. Just tell mommy and daddy over and over "I'm not gone, I just beat you home." I will be praying for a miracle.
    My cousin's son, Rowan, has been diagnosed with a stage 3 liver cancer that is very rare, and is only 18 months old. He needs all of the prayers he can get too, so if you have time, please remember him in your prayers.

    Stay strong sweetheart.

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  116. Wow. All of you are an amazing inspiration. Thank you for opening up to the world and sharing your story.

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  117. What a beautiful family you have, Avery! May your life be full of smiles, love, and adventures!

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  118. I wish avery and her parents the best. I live in CA and work as a case manager in early intervention for boys and girls who have problems similar to Avery's. I had a beautiful little girl on my case load several years ago names jessica with SMA1. She lived until she was 4 years old, she went to preschool at the local head start program and drove her own Electrical wheelchair. while using AAC device to communicate. She was one smart cookie and her family didn't let anything stop her! You go avery!!!

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  119. I think Avery would like sailing or boating (speed boat) she looks like a water girl. Oh don't forget a trip to the zoo or aquarium! Big Hug from Vancouver,Canada.

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  120. Avery, I don't have any kids of my own. But I did have a dad once who passed away when I was younger. As much as I want to be selfish and wish him here now, I know that where he is is much better than the pain he went through while he struggled through his illness. I am truly heartbroken for what you and your family are going through. Just looking at your pictures I can see that you are full of life. The time you are spending with your family will be enough memories to last them a lifetime. I hope that by some miracle you overcome SMA1 and live to become a healthy, beautiful young lady. My thoughts are with you and your family.

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  121. We had a kind of "bucket list" with our daughter before she passed away, too. One of our favorites was - visit the ocean and dip her toes in the water. I see that someone already suggested that for Avery, though :) Our hearts go out to your family. You are so right to enjoy what you have while you have it.

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  122. Dear Sweet Avery,
    I have a one year old and another on the way. To think about going through this with one of them is completely heartbreaking. I think I used a box of tissue to get through this blog. Your mommy and daddy are pretty special people to be helping you share your story and to use your condition as an opportunity to educate. I, like many others, had never heard of SMA before today. Avery, what a beacon of light you are in this world. I hope you continue to shine for many years to come. Wishing all the best for you and yours.
    With Love, Cindy

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  123. Hi Avery, I read your blog for the first time today and saw that you want to be a flower girl in a wedding on your buck list. Well I am getting married in May and could use a sweet sassy girl like you. I know you don't know me but I feel like I know you. Did I mention its in Puerto Rico? A destination wedding is a serious buck list item.

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  124. Your story touched my heart! As a grandfather of a little girl with a very rare condition that is often life threatening as an infant, I can relate well to you and your family. But I fervently believe in the power of prayer and existence of miracles. My granddaughter is a bucket full of miracles. I believe all things are possible through faith in Jesus Christ. I have seen it in my granddaughter with my own eyes. I am praying for those miracles for you Avery and for strength for your family.

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  125. Oh my gosh, my heart goes out to you all. I just came across this story, and I cried, the whole time reading everything. You are a blessing Avery, a true blessing. You were put on this earth for a reason, to touch millions of people and spread your story. I know there is no cure, and no research, but I hope that you beat the odds and becaome a miracle survivor. I'll keep updated on you, my love goes to you.

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  126. You are a beautiful angel on Earth Avery! God Bless You and keep you

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  127. Love her. Love her like there is no tomorrow. Do all the things a parent would do with their child.

    As a parent to a child with special needs, I can honestly say that testing isn't always the right thing. Had you known in advance of the diagnosis, would it have made a difference? Would you have chosen to terminate? Sadly, that would have been the option given to you by the doctors and you would not have known the joy, the tears (good and bad), you wouldn't have "met" all these wonderful, loving people who offer support.

    In a world where less than "perfect" is accepted, termination rates of children with a "genetic anomaly" is outrageously high with a prenatal diagnosis. In children with the same "anomaly" my child has, there is a 95% termination rate though out the world. I am one of the 5% who chose to believe that my child is "perfect" for me. Just as Avery is perfect for you.

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  128. I stumbled upon your blog. I have a daughter with hypotonia but no diagnosis. She is now 2. Although I can't totally understand what you're going through, reading your blog post takes me back to when I knew nothing about my daughter and just wanted some answers. I remember in my pregnancy (she was #4 for me) that she nearly never moved and I knew there was something off or wrong about that. But my OB didn't seem concerned at all even though I'd mention it in all my appointments.

    There absolutely does need to be genetic testing during pregnancy for SMA. Even though we still don't know what is going on with my daughter and may never know, people need to be more aware and proactive. I now fear for her that she doesn't start to regress with everything that she has accomplished so far. She held her head up finally at 7 months, turned over at 9 months, sat at 1 year, crawled at 15 months and walked at 2 years (now potty training, yay!).

    Your family is going to be in my prayers often from now on as I have a glimpse of things you went through in the beginning. Stay strong, she is a BEAUTIFUL baby.

    -Emily J.

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  129. Avery,
    You are such a brave little girl to share your story with the world! I am a Mommy to 3 kids and my heart goes out to you and your Mommy & Daddy. I am going to follow your story - all your milestones and adventures!! You have already touched so many people and have made such an impact on many lives - those are things on "my" bucket list... Much love, thoughts, and prayers to you and your family!!

    From my family in Minnesota to yours...

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  130. To the Canahuatis:

    This may be a real longshot, but as my father died of ALS (Lou Gehrig's disease), also a motor neuron disease like SMA (yet different from it in a number of ways), my family and I did a fair bit of research on 'cutting edge' treatments for this currently incurable disease.

    We found out that lithium has neuro-protective qualities, and that it has greatly delayed the progress of the disease (ALS) for some ppl, though studies disagree on whether it is effective or not. Some of the folks we talked were reporting personal experiences though.

    Unfortunately, my father was diagnosed extremely late (a month before his passing) as his ALS symptoms initially looked a lot like another, less serious condition he had had. And his first doctor was of questionable competence as well. :(

    Perhaps something to investigate further, perhaps not. Wish you the best in your trying time.

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  131. Praying for you all! Avery, great name, my niece's name as well :-) She is also just about 6 months old. For you Ms. Avery, stay strong for your Mom, Dad and family who all love you so much!! Keep that smile going ALWAYS! Thank you for showing us that and reminding us grown ups all to do that as well. Bucket list is such an awesome idea too. I had the pleasure of living in Houston for 2 years and know you are surrounded with kind souls. Prayers to your parents and you always!
    - Courtney (Ohio)

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  132. Our thoughts and prayers are with your family. We will definitely pass this on.

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  133. Hi Avery. I Just read your story on yahoo. You have touched my heart in so many ways. You are one of GODs little blessings. Mommy and daddy should be proud. I have a little boy whose two and half. we live around the houston area and will try to make it to one of your benifts. Remeber to be good for mommy and daddy.

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  134. Dear Avery, I just read about you on Yahoo news, scratch becoming famous off your list! You hang in there, you become proof that sometimes doctors are wrong!

    I wish I knew you and your mommy and daddy, I wish I could meet you just once. I wish I could press a kiss to your cheek and tell you about my own trials with my own disability. I wish that there were more that could understand, just a little.

    Most of all, Avery, I hope that every day you see smiles, that you understand that your Mommy and Daddy truly love you.

    And to Avery's Parents, remember that wishing you 'could have done more' is pointless. She's beautiful. You two are more than amazing, more than exceptional parents to even start this blog for her. I wish you laughter and happiness, as I'm sure she does too.

    With much love--
    someone who was 'suppose to die'

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  135. Hi, Avery! Your parents are AWESOME for helping me get to know you! I think you can really tell a lot about a person through their eyes--clearly, you are one sweet, loving girl. I am really looking forward to learning more about you. My body has kept me from living normally for several years now, but you know what I love more than anything? Great music!! What music do you like? I hope you can meet some music-makers soon--nothing beats a good concert. :) Rock on, Avery!!

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  136. There is so much to say... And I'm not a great writer like your Dad and Mom. I have a 5-yr.old almost 6 girl (as cute as you are) that was diagnosed with Leukemia 3 yrs. ago, I feel the hardship and suffering of your Mom and Dad. She is doing well so far but I feel the life you all live right now, it is a rough road - it is dirty, spikey, rough, rugged and could go on and on but life also offers options to make the road a little smoother. I stayed away from reading other leukemia cases because it put me in a zone that I didn't want to be because there are different outcomes for each case. All I did was to focus on the present, follow the doctors, be the advocate of my daughter, educated myself about the disease by reading articles on the disease only from valid sources, and lastly, we surrounded ourselves with only positive people that provided us with so much love and strength to get us through the darkness. Though I don't know you and your parents, you are surrounded with love and strength. We are sending you all love, positive vibes, strength, prayers and so much more from our home in Northern California to yours. xoxo

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  137. Its amazing youve gotten nearly a million people to this sight. You go girl! Spread the word.

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  138. Well Avery, your story has reached Australia now! THe internet is amazing and I think your parents and grandparents are so strong to document your bucket list like this.
    I have one thing for your bucket list...go for a swim and float, in a pool, at the beach...I am not sure where you are from.
    You should also eat mangoes and get your hands all sticky and do some painting and accidently paint yourself like my daughter does (although she does it on purpose).
    Lots of kisses from across the oceans. xx

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  139. Hi Avery... Every seconds, minutes, hours, days or years we will be part of you and your family's survival and thanks for this blog that your family did because we got a chance to share the sorrow and happiness of your family. I really admire all of you. I love you Avery...

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  140. Hi Avery,

    My name is Erin, and I don't know you! I wish I did! I was born with Congenital Heart Defects, and like you have a really rough time my first years of life! I have strong parents just like yours! Spend all the time with them you can! I don't know how your story will end, my ending has yet to be written just like yours! I just turned 30 years old, and I'm getting married this year! I want you to lay in the grass and look up at the clouds, marvel at the moon, pretend you are a princess, play with your cousins, see the ocean, I dream for you all the dreams I was able to have ... I want you to know I'm praying for you, praying God lets your story help many others and allows you to live your dreams. Don't stop living sweetie, until your story ends, do all you can do! Do all your body allows, always do what you can do and never let anyone stop you!!!! I love you!

    Erin

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  141. Dear Avery,

    I just read your story on Facebook and i am truly touched that you are still here. You are the reason that started the research for SMA cure... I am truly so sorry that you are suffering that you can't move but your daddy and mommy knows in their head tht you are moving right now. I never want a child to suffer any pain at all and if I could.... I would take it away from you so you can live to do your density that God sent you here to be. Pray pray pray, all we can do is pray and raise money. Praise the Lord that you are still here. I will definitely pray for you to be cured of this SMA thing you have. Remember... be good for mommy and daddy they love you so much.

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  142. Hi Avery: Your a beautiful baby. You and your parents have touched my heart with not only your story, but your courage and generosity in sharing your story with the rest of us. Your attitude and beautiful face have taught me how to be a better person and to celebrate your accomplished life of courage, hope and humor. God Bless and again thank you. I will keep you and your parents in my prayers.

    P.S. Have you visited an American Girls store or restaurant yet? I am thinking you might really enjoy the Bitty Baby dolls...and with a smile like yours (Dad and Mom probably won't be able to resist)...I'm just sayin..

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  143. Hi Avery. You are an incredibly brave young lady and, if you didn't already know, your parents are awesome! Keep ticking off that bucket list and you may want to add a trip to Alaska.......it's incredibly beautiful and has a spirit almost as big as yours :-) God bless.

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  144. Your story is spreading, and you are an incredible family. Avery is touching the lives of people all over the world. Your blog is amazing, and I will be following it daily now. Lots of kisses to that beautiful, beautiful angel! <3, The Moore Family

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  145. Hey Avery! I know you are trying to visit Ellen and if you do I would love to meet you! I live in Burbank right by Ellen's studio. I think you are an inspiration (I know a lot of people say it but I thought you should know anways :). I am 15 years young and you made me realize how lucky I am to have made it this far. So thank you!<3

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  146. Become a mommy
    Have a pet (even if its a rock)
    Have a house party when mom and dad go out of town

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  147. Dear Avery, may the Lord bless you and all your loving family abundantly. Praying for you

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  148. Hello Avery! A friend on facebook just shared your story with me. I am so glad she did. You see, I work at a grade school that has a very special classroom for very special kids. We have kids with Rhetts, Cerebral Palsy (the really severe kind), Hydrocephalus, and other disorders that make life a challenge. None of the kids speak verbally (but they sure do communicate in other ways!), a lot of them have feeding tubes, and almost all of them have a wheelchair or use gate trainers to get around. Now I know that going to school would totally be on your bucket list but it seems you are a realist about the time God is giving you here. So, that said, I was thinking of all the fun art projects that my kids do using their hand and foot prints! If your Mommy and Daddy want some ideas they can look at my boards on pinterest! Just have them look for Nancy Bresnahan and then find the "hand and footprint art" board. Lots of fun ideas there!

    PS: I love your strength and your parents encouraging attitude! Good luck filling your bucket list!!

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  149. WOW.. All expenses paid....come to our mtns of NC & at least 10 accomplishments are Averys to be had...ride in my jeeep, hike, camp, rock climb, play golf, etc. we are here for you!

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  150. Hi Avery. An article on CNN about your bucketlist caught my attention and then when I read your story I got a chill. You see my first child, my daughter Katie, was born with SMA on June 7th 1994. We didn't get her diagnosis until she was two months old. We had no idea that we carried this gene and had never even heard of SMA. We like your parents were devestated. Katie was precious and sweet just like you. We lived to make every minute of Katie's life the best it could be. Katie left us on November 11, 1994. I don't hear much about SMA these days so I had to write this note to you and your family. It is great that your parents are bringing more attention to this devestating disorder! I wish you a happy and blessed life. Corrie Metz

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  151. Hi Avery. You're an amazing girl. I was touched by your story. I make silver fingerprint charms of children at hospitals and would love to make a charm for your mommy and daddy. If they want one (a gift from me), they can send an email to info@RegaliJewelry.com. Have a great weekend.

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  152. Hi there Avery,
    I just read about you on CNN and worked my way through your sweet blog. You are one beautiful girl. You have done some really cool things with your mommy and daddy for being such a teeny tiny. You inspire me to do more with my own teeny tiny. You have some very neat parents. Having a little experience in the "club of hard stuff happening" myself, I know it takes a certain amount of inner strength to recognize blessings in the middle of the hard stuff instead of after the fact. They are inspiring and you, my dear, are inspiring. Thank you for raising this awareness. I'll be sure to tell all my friends about you and SMA. I really, REALLY hope you get to be on Ellen. I'll be watching for you.

    Best wishes to you and yours,
    Katie

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  153. I want the family to know, I don't mail things often, and guess others may put off doing something if they have mail it too or forget so...

    I put $25 in this paypal account for them so people can donate ONLINE RIGHT NOW :)
    I will forward anything to you at the above address with documentation so you know you have it all. :)

    http://www.chipin.com/mypages/edit/id/b3bab4abb9790f24

    I realized it doesn't show my real name so I am Leslie Howard-Redweik, online known often as "LifeDontWasteit". :)

    All LIFE is precious. :) Some just remind us a lot more. God bless you little Avery and family.

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  154. Thank you so much for sharing your story. I've always worked with children when Special needs and have never heard of this. The world is so lucky to have someone like you to make people aware. I don't know if it's been suggested or not, but you should take your daddy fishing. And afterwards, listen to the song by Trace Adkins song 'Just Fishin'. You're daddy will understand completely when he's heard the song :) Much love from a fellow Texan in San Antonio.

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  155. Hi Avery,
    You are so amazing for sharing your story with the world. I suggest coming to the Beautiful Gulf Coast. I live in Perdido Key Florida. The beach is a amazing and is something everyone should be able to experience. While you are at it you should do a little fishing :-). That is always fun! Enjoy everyday!

    Lindsey

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  156. Dear Avery, what an amazing girl you are! I read about your story on CNN and just read through parts of your blog. I saw your mommy teaches kindergarten. I do too!! I think I Skype session with kids from south Dakota would be a neat thing to add to your bucket list!! I would love to chat with you! Tell your mommy and daddy to email me at amyjames0315@ gmail.com if they want to chat!!

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  157. Ten years ago we lost our son to SMA Type 1. Sadly we had just a few days between learning the diagnosis and saying goodbye. He was less than three months old. Like your family, we had never heard of SMA before. Thank you for helping educate others. Life is not measured by the amount time we are on earth but rather by the mark we leave during that time. Avery, you like our Aidan, have made your mark by helping others see your strength and your smiles.Your family is in our prayers, we now how difficult this road is.

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  158. hi Avery! Sending hugs from NC! Your mom & dad have written a cool blog all about you & I am so happy to get to know you! Cant wait to hear about all the things you get to do! There are so many fun things that everyone here has suggested, I think you are going to be a pretty busy little girl for a while. Here is what I would add to your bucket list, hope other people didn't say these already!

    **toes in the sand is a big one! The beach is the best, waking up to see the sunrise at the beach is the best part of the beach, for real! (i know someone said it but it is totally worth repeating
    **NY Pizza!!!! There is really nothing like it, but it really has to be from NY, the others done really cut it! Dont let anyone tell you different
    **Making a tent in your living room with sheets, pillows & flashlights
    **put your first lost tooth under your pillow for the tooth fairy
    **Disney Store
    **American Girl Doll Store
    **Bippity Boppity Boutique in Disney world


    I will be back really soon to see what other fun stuff you've been up to precious girl!

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  159. Hi Avery,
    I just read your story on CNN, and I just have to say you are a very special little girl. I hope mommy and daddy give you a kiss for me. I'm expecting my first little bundle of joy myself. The SMA test was not offered to me either and I am a high risk mommy. I will be seeing my Dr. in a week and will ask for the test then. No matter what happens I want you to know you've touched me, my family and my friends. I will share your story and have told Ellen she would be a fool not to meet you. My cats Bella and Sera send their snuggles and my two bunnies Hopper and Sir Bunnington send bunny nibbles. *They're like eskimo kisses only softer*. My bucket list wish for you is a simple one. Snuggle one you love, and snuggle someone who needs love. This snuggle's for you!

    All my love

    Kat Prorok

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  160. Dear Sweet Avery,
    You are an amazing baby girl with an amazing family. Your story is such an inspiration. You are not only spreading the word about SMA but you are also giving people a life lesson on how to live life to the fullest & not take it for granted. Life is what you make it & sweet angel you are making the most of every minute. You are in my prayers. I cant wait to see what you do next. Sendin you & your mommy & daddy lots of love from McMinnville, Tennessee. God bless you sweet baby girl.
    *Michelle*

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  161. Avery...you, your mommy and daddy, and all of your family have my prayers, love, hugs, tears, laughter, and best of all smiles! May each and every one of your days be filled with joy, happiness, and wonderful memories for all of you.

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  162. I am one of the few dozen who knew about SMA before I came to your site. A former high school classmate of mine lost his son last year to SMA and they have created this foundation, imwithmiller.com. They too are trying to raise awareness. Your daughter is beautiful and I am glad you are able to live a little on the bright side.

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  163. She is beautiful. I love your blog, and will be following Avery's adventures. She is touching soapy lives.

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  164. Dear God,

    Please don't take her smile away...

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  165. Avery, you are an amazing, extraordinary and unique little girl, but you probably get told that daily :) Your parents and family are the true definition of strength, courage and unconditional love. I admire them and you. I love reading about all your stuff you can check off your bucket list and all the new things you are learning about daily! I didnt read the whole list yet, but if I had to give you suggestions:

    **Camp in your backyard, with a homemade tent. Blankets, sheets, pillows. Make sure you leave a hole to star up at the stars.
    **Breaded feet aka sinking your toes into a beach and if you don't have a beach nearby, make one. A blow up pool with sand sprinkled in the yard works just fine.
    **Dress up. Take all of Mommy's fancy clothes and shoes, throw on a little lipstick and bedazzle yourself. Don't forget your sunglasses.
    **Go to an animal shelter and play with all the little puppies that are so happy for love and attention they give you lots of licks.

    I will think of some more, I'm sure. But for now, get going and work on that list. We will all be here reading about you and admiring you. Most important, NEVER stop smiling, laughing and believing....without hope there is nothing!

    XOXO

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  166. My Identical twin brother died before his 1st birthday. We were the first twins in the world that proved that the TOFF disease was not genetic. Nathan Vaughan Player had the disease and i didn't, he died and i lived. This had brought a tear to my eye. I miss my Twin!

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  167. Dear Little Miss Avery,
    You are auch an awesome little girl! I heard about your "bucket list" 2 hours! So I searched online to find your blog! I was happy onced I found it! Tell your Mom and Dad they are so very luck to gave a daughter like you! I read about how you have a McDreamy and a McStreamy in your life! My first thought was that is she a Grey's Anatomy fan too? I hope so! I was thinking about your bucket list and thought that very girl needs to have on her list is to go on her first date with her dad! Also don't forget to add going to the prom! And shopping for that 1 perfect dress with your mom! Avery I love you already and only have known of you for @ 3 hours and you don't even know me! Thank your mommy and daddy for allowing the world to get to know you! Remember you are a daughter of god and he loves you very much! If I can help you check stuff off your bucklist I would be more than happy too! I live in West Wendover, Nevada so if there is something out here you want just have your Mommy email me at tonimelville@hotmail.com.
    Sending our love, prays, and happy thoughts!
    Love The Melville Family West Wendover Nevada

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  168. I've read your blog and I thank you for being a part of my life, and everyone else who has visited, learned, and appreciated you, even if from a distance. I hope you get to accomplish as much in your Bucket List as you want to do, and enjoy every minute of it.

    On a sidenote, you might want to don a cape and costume and scratch that off your Bucket List, because you are now a hero to those who have never heard of SMA before, and now are more cognizant because of it. You have put a face to the name, gave awareness, gave inspiration, and brought the fight to the table where it can be better understood and combated.

    Thank you and best wishes.

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  169. Avery you are a gem! Even though you may not have much time here it seems you have a plan to live life to the fullest and that is totally awesome as many people who live so long don't get the chance to do that.
    Your Mommy & Daddy have to be the strongest superheros I've heard of and I love their captions and positive attitude. It is contagious.
    Every little girl needs a BFF and a crush on a super cute pop singer - maybe justin Bieber or the one direction boys.
    Stay strong :)

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  170. Dear Avery:

    Thank you so much for sharing your life. I have a little girl who is 4. You have reminded me to give that little girl all my love every day.

    My little girl loved the beach when she was your age.

    Please know we here in Virginia are praying for you.

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  171. Avery:

    I work for a non-profit organization that helps patients. If you need anything please have your Mom and Dad reach out to me--jromano@uneedpsi.org.

    Thanks,

    Jim Romano

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  172. Hi Avery! ur soo cute! i love u so much:)) and i love mommy and daddy for giving me the chance to visit ur blog everyday to see all the new things uve done and see ur beautiful pictures in ur cute little outfits!
    i have a few new ideas for ur bucket list! i hope u like them:))

    1- Name a Star 'Avery'!! yes, Im talking about a REAL star!! u will even get a certificate with the star's coordinates and everything:) isnt that cool?!! here's the website:

    http://www.nameastar.com/index.html

    2- Get a pet! (a puppy! u would be best buddies:)!)
    3- Get ur ears pierced so u can wear beautiful Earrings! (dont be scared, it does not hurt!)
    4- Go to the zoo and feed the animals!!
    5- Have a professional photo shoot with mommy and daddy (and maybe ur grandparents)
    6- customize ur own outfit with ur name on it!

    i hope u like my ideas:) if i think of anything else, i will let u know! i love u Baby Avery and keep Smiling!!

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  173. Someone told me about this blog and they said they couldn't remember what "genetic disorder" she had.. So I had to come and find so I could read about this amazing little girl.
    My niece was born August of 2006 and found out she had SMA also... Unfortunately she died September of 2006 ( she was exactly a month old.
    I am very sorry for what you're going through..
    Best of luck to all..
    Avery, you are such a strong and brave little girl. :)

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  174. I just found this and I am blown away by Avery's spirit and the love in your family. I will keep Avery in my thoughts and prayers....and I saw one of her bucket list things is a ride in a Jeep...I have a Jeep Liberty, so if you're ever in NJ/NY, let me know!!

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  175. Every little girl wants to marry her daddy, when she grows up. If you could figure out a way for that to happen for Avery, that would be awesome.

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  176. Hi Sweet Avery!

    A few more things to add to your list...

    Catch a frog (just don't kiss him!)
    Buy an ice cream from the Ice Cream Truck
    Have a brain freeze from eating the ice cream too fast. (It goes away quick!)
    Make mudpies with your cousins.
    Jump like you mean it into every puddle you can find.
    Have butterflies in your stomach on the first day of school.
    Be the carrot in the school's play. (Nutrition is entertaining!)
    Eat just the marshmallows out of an entire box of Lucky Charms.
    Roll your eyes at Mom when she wants to buy you a shirt that is "so not cool."
    Wear fairy wings to the grocery store months after Halloween.
    Kiss a boy.
    See the look on your Daddy's face when he finds out you've kissed a boy.
    Beg your parents to stay up past your bedtime. Use the excuse "Everyone else's parents let them!"
    Hide under your covers with a flashlight to finish reading your favorite book.
    Throw a fit. Be sure to fling yourself from couch to floor and back again.
    Have an imaginary friend or two.
    Unravel an entire 6 pack of toilet paper. Blame your imaginary friends.
    Make funny faces at yourself in the mirror.

    Life is beautiful. Some of us learn that sooner that others. Thank you for sharing.
    ~Mommy of two

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  177. My husband and I have a son born just three days after Avery. A week ago, I quit my job so I could stay home and have more time with him. I find myself really missing work, my co-workers and the life of a working mom, yet I know deep down that I will never regret having this time with my son. Thank you for sharing your story and for being so positive. It makes me realize how selfish I've been and that as you guys are staying positive and making the most of your time with Avery, I should be doing the same with my son.

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  178. Hellooo sweet Avery..

    You know what..knowing about you dragged me all from Cairo, Egypt.
    You're such an adorable lil angel..and deserve alllll the love in the world.
    I am alreaying thinking in couple of activities to add to your bucket list..hmmm..what about to attach a lil white jasmine (or lotus) flower to your hair?!
    You look amazing already sweetie..the lil flower would love to be so close to you.

    And I am so enchanted to "meet" you, Avery..
    Sending you LOTS of FLYING KISSES! <3

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  179. It is amazing what your family is doing to bring awareness to this disease. I feel so blessed to even be able to read Averys story! As a mother of two my heart goes out to everyone going through this. You are amazing parents with an amazing daughter and we send all of our love and great thoughts yalls way!

    "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
    Jeremiah 29:11

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  180. Oh dear God, what a sweet, sweet baby. I thank God every day for having my two healthy children, but I have also suffered other tragedies in my life, so unfortunately no one is immune to sadness and devastation. I am praying for sweet darling Avery and for her loved ones to find peace and acceptance. I have learned that understanding in these situations is not possible, so peace and acceptance is the best we can ask for from God. God bless all of you!

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  181. God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.”

    I pray for strength for you and your family. In heaven there is no pain or sorrow. Your baby girl Avery is looking down upon you guys and watching over you and your family. When it's time God will take you guys up there where you will reunite as a family and all live together without pain. I pray for peace in your hearts. In this time it is okay to cry and let go. God is holding your right hand in the loss of your baby girl. my heart is just broken for y'all keep the memories in your heart forever.

    Elys Matula

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  182. Sending love and comfort to your Daddy & Mommy and those who loved you...I have no doubt you are the sunshine in their day and the smile in their laughter...Keep smiling sweet girl...

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  183. You are a beautiful, prescious little girl. I have two nieces that recently passed from SMA type 1. Emma was 9 months old, and Maiya was just shy of 7 months old. I believe like them, you served a purpose on this world. God chose your parents to care for you. He knew they would do a remarkable job at making your little life worth every second. As for your mommy and daddy, words cant describe the pain. As I mentioned, I have two nieces (both are my sisters children) who passed away from SMA type 1. Like you, our family continues to raise awareness for this in curable disease. Stay strong and thank god for bring that gorgeous little gift of life with the brightest smile into your world. You truly are blessed. When all you have are the memories, keep smiling, Avery is watching :)

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  184. I am shocked that you lost your daughter so quickly. She knows how much you loved her. Tomorrow is the 7th anniversary of losing my mother to breast cancer so please know that there is a wonderful, loving, very missed grandmother in heaven to watch over your Avery!!

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  185. Avery, you are beautiful and your mommy and daddy were terrific parents. They miss you very much, but now you are in heaven with our son Christopher who also had SMA. He is really handsome and you should look him up! :) Reading your blog brought back so many memories. He never stopped smiling, either . . . and we made his hand and foot print . . . and his body posture was just like yours . . . and I'll bet your tummy moved in and out real hard when you breathed. Christopher would have celebrated his golden birthday on March 22, but like you, his life ended much too soon. Having him for 4 1/2 months was WAY better than never having him at all. We wouldn't trade it for the world. And, now he has a beautiful healthy sister who is studying to be a special education teacher . . . because she LOVES special children. Know that your life was worthwhile--and be sure to look around for Christopher. You two would make a great couple!
    Christopher Lee Hamilton, 3/22/90-8/7/90
    In his memory, Jerry, Cindy & Katie Hamilton, Washington IL

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  186. Add someone else who never knew about SMA and had additional genetic testing done after the pre-screening tests: My brother. Thank you Avery. You have inspired me beyond measure.

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  187. Even though the post causes so much of heartache, Avery’s story is truly inspiring. Hats off to Laura and Mike for sharing everything with such honesty!

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  188. Thank you Avery. You have inspired me for this wonderful gift to Send gifts to Pakistan from UK.

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