Thursday, April 26, 2012

Where do I even begin (part 1 - Saturday/Sunday)

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.


Before I recap my last few days, I wanted to share some information sent to me by a few of my mommy's friends who called their separate insurance providers and asked about SMA testing.  Here's the results:

Friend #1 - "We will cover the entire balance at no cost to you."
Friend #2 - "You will be responsible for a $50 copay plus 10% of the total balance due."

Quest Diagnostics offers the test for $950 when billed to insurance, so Friend #1 could be tested for FREE and Friend #2 pays $145 ($50 + $95) to find out if they are carriers of the SMA gene and stand a risk of their children being born with SMA or as SMA carriers.  Ironically, and what appears to be the norm, neither of my mommy's friends had ever been offered the SMA carrier gene test.

Daddy told me when he was much younger, there was an angry Canadian woman who wrote a song about situations like this, so I looked her up on YouTube & apparently daddy isn't the only one who knows her.

On a somewhat positive note, daddy just got off the phone with his friends who'd just left their 23 week exam and before they could ask about SMA their Ob/GYN mentioned it to them.  Their Ob/GYN knew all about me and said that SMA has become a hot topic of late and he felt compelled to start offering the test to all of his patients (new & old).  My response to that is, way to go Mr. Ob/G, but why did it take 23 weeks into my daddy's friends pregnancy to make you feel compelled to mention SMA to them, when you should have been compelled years ago?

Daddy told me when he was younger he remembers waiters used to politely ask, "would you like desssert?"  But now they bring out a tray with every dessert on it, let you see it, smell it, and then they tell you every last detail about pie, cake, mousse,  brownies, ice cream, and creme brulee until you submit to the guilty pleasure of every bite until there's only one bite left...as if you're saying to yourself, it only counts if I eat the whole thing.  My first thought was to say, whatever that means, but then I realized what daddy is trying to say is if we can convince waiters to shove dessert down our throats and provide us details about each one, then we should be able to convince doctors to force in-depth details about simple blood tests to us, especially when they can determine the potential risk for life altering/threatening diseases.

Then I reminded daddy that sometimes dessert, just like SMA testing, is FREE and who says no to free dessert?  Then daddy told me that if dessert wasn't on the menu, most people wouldn't even know they could order it and the waiters probably would forget to offer it.  He also reminded me that nobody likes a whining baby so I should stop myself short of getting back on my soap box and just tell everyone about my last few days...hey I know what that means!

Soooooooo here's a look back at my last few days since coming home 60 hours after my "less than an hour long, minor, in and out surgery" on Thursday...

Saturday Evening:


After our long confusing day Thursday, an even longer day Friday, and then being told checkout was Saturday morning, we were all excited to be heading home.  But then someone dropped a ball somewhere and because they fumbled, there was some confusion and mommy & daddy were told the earliest we could leave would be Sunday morning around 2-3am.  It was about that time that mommy looked at daddy and said something about it was about to get ghetto up in here and she was going to throw some bows on people.  I told mommy that sounds like fun, but since I have limited mobility in my arms and can't throw anything, would it be OK if I keep my bow right where it's at?

Maaaaaaaaaaaandela!







About 30 minutes later, without any bows being thrown, a very nice doctor came in and told us they found the ball that had been dropped and we were free to leave.  Daddy whispered to me, "did they say we can leave for free?" - he's soooo silly.
We came, we saw, we partied like Rock Stars!














Even Rock Stars have to sleep!




I was stinky so mommy gave me a sponge bath when I got home.









Sunday:


After a good night sleep in my crib, it was time to rise and shine and say hello to all of my toys, but apparently I was so out of it after coming home from the hospital last night that I didn't even realize my room had been redecorated.  Personally I liked my room better the way it was before, but don't tell mommy & daddy because I think they spent a lot of money on the changes and I don't want to offend them.
Before
After








Once I became accustomed to my new "crib", I had to get ready for a fundraiser in my honor at Auntie Pasto's restaurant in Bellaire, TX.  As it turns out, I wasn't able to attend, because my mommy & daddy wouldn't let me since I'd just gotten out of surgery the day before.  Mommy & daddy did tell me there were a lot of people there who were thinking of me and wanted to know how I was doing.  In fact I was told the restaurant had people waiting out the door, they had to stop taking to-go orders because the kitchen couldn't keep up, and their credit card machines & computers crashed for over an hour.  When it was over, the restaurant owners said they'd never been that busy in 20+ years of being open for business and it was evident everyone wanted to be a part of my fundraiser.  Thank you to everyone who helped put my fundraiser together, showed up, called orders in, and to Auntie Pasto's for being gracious hosts!


Items I Can Scratch Off My Bucket List:
1. Make an impact on a doctor to mention SMA to his patients.
2. Wear a big bow on my head
3. Party like a Rock Star
4. Get a sponge bath
5. Redecorate my room
6. Have an SMA Awareness fundraiser thrown for me

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.

152 comments:

  1. Avery, I found your blog yesterday. You made me laugh, you made me cry.. I just love you already! My mom wrote about you today on her blog! And will share it on her Facebook OVER and OVER! Hang in there precious girl. I would love to meet you! Oh, and I live at the beach. Come visit, we can play in the sand together. My treat. :) That's on your bucket list right? Oh, and lets do tattoos together.. I was thinking butterflies. On our feet. Just don't tell my mom yet, she might have a heart attack.

    Love,

    Mirah

    ReplyDelete
  2. "About 30 minutes later, without any bows being thrown, a very nice doctor came in and told us they found the ball that had been dropped and we were free to leave."

    Sweet girl, you are soooo cute!

    What about this for your bucket list: Wear makeup or high heels (they make special pairs for babies!)!

    ReplyDelete
    Replies
    1. There's a place on westheimer called shoe fotage and they have baby heels made of soft cushion material. It's the cutest diva thing!!

      Bless your heart! Your while family is in my prayers!

      Delete
  3. Hello dearest Avery. I hope you are having a good day. I have a little 4 month old son, Liam, and he wants to say hi too. Wish we didn't live so far away because he is always asking me if he can hang out with you. If you are ever in Maryland, let us know. Liam says you can play with all his toys and sleep in his room. :)

    You are in our thoughts and prayers. Keep smiling sweet Avery.

    xoxo,
    Rizza from MD

    ReplyDelete
  4. Avery, please tell your daddy that people can be tested for SMA and other genetic diseases for $250 here: https://www.counsyl.com/ It's a simple fun saliva test!

    ReplyDelete
  5. Your making a difference! Keep it up.

    ReplyDelete
  6. Dear Avery,

    I highjacked my mommy's blog to write about you today. She told me about your story and I had to share it with everyone we knew.

    Check it out if you get a chance my friend!

    http://mrslinderman.wordpress.com/2012/04/26/emerson-here/

    Love, Emerson!

    ReplyDelete
  7. avery, you are sooo cute and sweet! keep up all the great posts and smiles! i wanted to let you know that i can't wait for may 1st, and i'll be thinking of you and keeping you in my prayers. :) :D

    ReplyDelete
  8. Little friend, it was very nice to know everything went well, and I love to see you smile even after two long days.
    I am very very exited to hear that your pregnant friend was asked to take a SMA test because he knew about you. In less than one month your are already making a difference! You are a hero already. Thank you for teaching us, and encourage many people like me to spread the word. Keep in touch.
    Tell your mommy and daddy they are amazing.
    Your friend
    Monica

    ReplyDelete
  9. Avery, I was at your fundraiser and you would have been impressed at all the people who came out for your cause. There was a person that is in the US army in South Korea who had heard about the fundraiser. He and his wife called Auntie Pasto's to purchase a gift card so that his family here in the area could come! Proof that your news about SMA is reaching around the globe! Another reason for you to smile one of your beautiful smiles!

    ReplyDelete
  10. Avery, you are making quite a difference here! I check your blog every day and I'm spreading the word to everyone i know! I think you're a neighbor of mine because I live right next to Auntie Pasto's and all I can say is that Houston is very lucky to have you! you are one amazing little girl!!!

    ReplyDelete
  11. Dear Avery,
    You are in my thoughts & prayers.
    Love,
    The Morgan Clan in NYC xo

    ReplyDelete
  12. I love that your name above your bed says "bravery"...that says it all right there!

    ReplyDelete
  13. Hi Avery! You are such a Superstar! I am glad the fundraiser was such a success! Please let us know when the next one is! I was looking up info on a SMA WALK here in Houston and it seems that the movement has not really kicked off. Let's give it the steam it needs and start an Avery Team!

    Let me know what you think! It takes a village but I am pretty sure you have that already:-)

    ReplyDelete
  14. "about to get ghetto up in here and she was going to throw some bows on people." HAHAHAH I love your blogs Avery! You have opened my eyes to so much and I love sharing your story sweet girl!

    ReplyDelete
  15. I love your "party like a rock star additude" great job on redecorating the room to i'm reading little Avery, and loving every bit! Just sent this to Facebook,twitter, and google!

    ReplyDelete
  16. PEACE

    I sit in the sunlight.
    I feel its warmth on my face.
    I stroke my companion’s soft fur.
    As he looks into my face.
    I hear the summer birds singing
    A song of graceful flight.
    I here the wind’s whisper
    as it dances through the light.
    I listen to the sounds of the water
    across moss covered stones.
    I feel the serenity of a simple life.
    I live my life in a peace born of innocence.
    I live a life in patience, and understanding of my world.
    I have no desires beyond what nature provides.
    I have no needs beyond the gifts of my life.
    I fear not the past, nor worry for the future.
    Would you join me in my world?
    A world without care.
    Would you join me in a world
    of peace we all can share?

    4/27/2010
    Donald D Duncan

    My appologies for the Google Comment Name I had to use. Its from a very old account from when I was a Soldier. I dont know if it means anything. but the words are from the heart. May each of your days be filled with all the joy and happiness this world has to give.

    ReplyDelete
  17. Avery,

    You're such an Angel. Thank you for telling your story and allowing us to laugh and cry with you. I had never heard of this before and both me and my Fiance will now be tested thanks to you. I've also sharred your story on my social media channels and with my family. Your beautiful smile and your remarkably loving family are in my thoughts and prayers. Live life to the fullest everyday.

    ReplyDelete
  18. Dearest Avery, You are just precious, I have had 2 little girls, just as amazing as you are. My first little girl, name Lindsey, now lives in heaven with Jesus, she ws only 6 months old. BUT.... her precious sister, named Amber, was diagnosed at 6 months with SMA type 1, too. The doctor gave us the same news they gave your mommy and daddy. Well, guess what? She is now 21 and in her 3rd year of college. She goes to Disney World every year, even with her vent, and rides everything, including "Tower of Terror". I know, that one is really scarey huh! She has been on a Disney Cruise and got to visit Atlantis on Paradise Island. We just got to make her a beautiful apartment in our home, that is all her own. She got to pick out her floors, and colors and EVERYTHING! She is pretty amazing. Make sure mom and dad know that sometimes, you kiddos are alot stronger than we may ever know. Make sure they live one day at a time, and keep on smiling, but I know bunches of kids with SMA that do live life to the fullest for a long, long time! If they ever want to talk to me, make sure you tell them that I am here for them! Hey, I love you even though I have never even met you!

    ReplyDelete
  19. As I was reading this blog, I started to cry because I reminder how my parents (both sets) where at the lost of both my brother's Joey at age 3 and Michael at age 21. At times I really dislike being the oldest children of 6. Because I reminder everything.

    Avery honey, you arethe sweetest blessing that everyone is sharing in your life. lots of love little angle.

    ReplyDelete
  20. Precious Avery.
    You have no Idea how many people are so proud of you and, of your mommy and daddy too!
    You are such a trooper!!!
    You have accomplished so much more than many ever will. A legacy already!!!! You know, I always prayed for all those couples that would love to have least one little one as lovely as you and since I have learned of you not only will I pray for your list to fill your bucket but I will also ask for a miracle that will make you so happy!!
    In the meantime ask your mommy and daddy to ask the make a wish foundation that you want to go to Disney since I am sure you would love to be a princess!

    ReplyDelete
  21. so cute she is 1 day older than my lil girl will be a major supporter an follower

    ReplyDelete
  22. I just found your blog and I have to say that you seriously have a little angel in your midst. She is a doll. Mom and dad, you are awesome.

    ReplyDelete
  23. Been reading this blog for a while now on my iPad. Moved beyond words. I have a four yr old daughter and I think of her at Avery'sage and I truly realize how my blessings have grown. Then I see the sign above her crib with her name and the two letters added to it and I lost it...and have not regained it back yet...just enough to wipe the tears away to write this. You wil
    All be in my prayers and heart from this day forward. The gift of each day, each moment has never meant so much to me as it does right now. I thank you for that.

    ReplyDelete
  24. My dearest little one. I found your blog tonight and I must say that you have made me laugh and cry. My son Cayden is 14 months old and he just gave you kisses. You have touched my heart and my very inner being. You are an angel. Mom and Dad you are my hereos. You all will be in my heart and prayers.

    ReplyDelete
  25. Avery

    You gave made me both laugh and cry. I have a 18 month old daughter that is diabetic so she is used to the hospitals and multiple doctor visits. I have also wanted to "throw bows" at some medical personnel but was able to contain myself (barely). I have shared your story on Facebook in hopes to spread the word to others. I also want to offer suggestions for your bucket list...

    Dance in the rain
    catch snowflakes on tongue
    Lick Brownie mix off of spoon
    Lay in the grass staring up at the stars

    ReplyDelete
  26. Hello avery my daughter also has sma type 1 but i encourage you and your parents to keep .jmthe faith because God can change any everything please don't accept it pray for healing I know me and my family will for you all

    ReplyDelete
  27. Hi Avery,
    I've just found your blog, and I love it. What you and your family are doing to raise awareness of SMA is wonderful. I am so pleased to see all your photo's and what you cross off on your list each day. I am a nurse and I have worked with a lot of kids for a long time. It is my dream that children never have to worry or suffer horrible illness's and that they can be children. All my prayers and best wishes to you all. I am going to keep up with your blogs and write daily to Ellen for you.
    Hugz.

    ReplyDelete
  28. Dear Avery, Dear Mom and Dad:

    Everything we go through fades in comparison of what you have to face. I am almost crying as I write this. All I can say is that I will be praying for you, gorgeous little angel. I came across your story on Yahoo!, and there was a wonderful lady there named "bohemian garnet". She wrote a great list of things you could do, and others added on to it; in case Daddy and Mommy missed it, I thought I would write it here so they could maybe take you to explore some of those activities. Stay strong and beautiful, Avery. I do not have the luck to know you, but my heart really, really goes out to you.

    "Fill a tub large enough for a her feet with dry beans, and let her kick her feet in them, she'll love the tactile sensation. Take her to a puppet show. Get her a fishtank, with some large, bright colored fish. Hopefully they have a pet, if not, petting zoos, so she can touch fur, feel the warmth of animals, and feel their warm breath on her skin. Dress up and take her to a dance, where hopefully all the ladies are in bright pretty dresses (square dancing or ballroom dancing). Play Doh, fruit scented magic markers, and large crayons. A laser light show, like at a planetarium, or shown on the side of a dam. Visit an aquarium where you can walk in the tubes under the water, and see the fish swimming all around you. Her own swing. Merry-go-Round ride on the prettiest one you can find. Cotton candy. Farm where you can go fishing (well stocked ponds) and let her catch her own little fish. Snow, The ocean, and salt air.The softest pink minkie blanket. A hummingbird feeder outside her window. Pet a tame white, cooing dove. Gentle tickles, belly blurps, and snuggling with Mom & Dad while they read a book to her."

    "Jewell" added: "add taking her to a butterfly pavilion and let butterflies land on her.."

    I hope Mommy and Daddy find those suitable.
    Love,
    Dafra

    ReplyDelete
  29. My Little Angel, I know you make your parents proud of being their daughter and only hope where they say there is none, you be there with them all their life. I am sure you touched everyone's heart today and thank you very much for helping others even at your so young age. Just be the shining star for everyone. May God bless you dear angel and keep smiling. Wish i had a star in my life too. Tell mommy and daddy thank you for all their love.

    ReplyDelete
  30. Good Morning Little one. I hope the day finds you wonderful and is filled with new joys. As I start mine I will remember your smile as my day gets hectic and I know for a fact that that will lighten any load.

    So you know. others out there have started fighting for you. Warriors all. You honey just became my Reason for living again. We old soldiers sometimes forget what we fought for. I thank you for reminding me.I am reopening my home buisness. I made cutting edge Tech when I was younger. And My Wife and I talked last night about it. In a few days my little shop will reopen and Ill start working again after so many years. Part of the profits will be donated to find a cure for SMA. But you have to make a deal with me. As I fight my PTSD deamons. You fight your illness. And remember to invite me to your High School Graduation, and Someday your Wedding. I refuse to give up. I pray to the Great Spirit that you dont either.

    ReplyDelete
  31. I just found your blog this morning. What a beautiful smile you have! I absolutely love the "BR" in front of your name! Your posts make me giggle and cry all at the same time! And, you type very well for a 5 month old!

    ReplyDelete
  32. Sweet Avery, you are beautiful and amazing. May God bless you and your family, always. You have touched my heart. Be sure with this upcoming Mother's Day you make your mommy a beautiful card for her to cherish forever.

    ReplyDelete
  33. Donating right now to Fight SMA. I am keeping your beautiful parents and your sweet face in my thoughts and prayers. Thinking of you outside Chicago! - Cindy, blessed mom to 3-year-old Riley and 15-month-old Maddy

    ReplyDelete
  34. John 9:2-3 New International Version (NIV)

    2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
    3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him"

    Avery - I think you really display the "works of God" What you and your strong mommy and daddy are doing to sprad awareness for SMA is so amazing, I can't even imagine. You are an amazing little girl and never give up hope. You will never be forgotten. My son John (severe heart condition, HLHS, 14 months old) sends you lot's of kisses. <3

    ReplyDelete
  35. Oh Avery!!!!

    My mommy heard about you and started crying! Daddy thought it was so silly that she was crying, but when he found out why, he cried to! Btw, My name is Ava and I'm ten months old! I think you should add "Get my own pen pal" to your list. My mommy said I could use her email to write you, so shorty1686@gmail.com is her email.

    My mommy used to help other kids get there last wishes, and she knows some pretty cool people. She told me to tell you that she is going to start making a whole lot of phone calls on monday!!!

    Sending hugs and smiles from MN!!!

    Love Ava Marie and her mommy Emily

    ReplyDelete
  36. I've been reading through your blog this morning...I love it. I love the humor and the joy from Avery's perspective! My heart goes out to you all.
    I have a few questions about SMA: beyond the genetic testing, what is the next step? What happens after you've tested positive for being an SMA carrier? Or (if possible?) your baby in utero has tested positive for SMA?
    I ask because I've never heard of this disease. My husband and I are trying to have a baby now, so you can imagine, this hits a little close to home.
    Again, prayers for you all, and you've done an excellent job spreading the message of SMA.
    Ashley

    ReplyDelete
  37. Dear avery I work as a bus aide with special needs children and see what these parents must have to endure everyday. Your mommy and daddy are special people that love you and cherish you. I can imagine how much patience and determination to give you the best life they can while you are here on earth with them and all your friends and family. Your story touches my heart and you have such a personality on you your funny smart and adorable all in one. I will be praying for you and your family. Enjoy all the special times you have with mom and dad and your bucket list has been so much fun to come along for the ride with. Thanks for inviting me along I will definitely send something special to you very soon. Its a small suprise gift that's going to come from my heart. I am a mom of a healthy 19 year old daughter and a healthy 16 year old son. I am so blessed! So who is your favorite music group or song can you blog and let me know? Shelly

    ReplyDelete
  38. Dear Avery, My little girl also has a rare genetic disease. Its called fucosidosis. When she was diagnosed the Dr looked my husband and i right in the face and said "dont expect her to live past her third birthday" Mercedes is turning nine in August! I can tell you have an awesome Mommy and Daddy and that will do their very best to keep healthy and happy, so remember Drs are people too and they dont know everything

    ReplyDelete
  39. Dear Avery, My name is Taylor and I am a 6 mo old little girl from NW Ohio. I wanted to say how brave you are! I had my mom tell the girls in my due date group about your story and asked them to spread the word. She made a post on cafemom and she keeps bumping it so as many mommys can see it as possible! We are also going to tell Ellen about you! Theres a lot of us in the group so hopefully Ellen will see all of us writing for you. Some things on your bucket list could be, ride a bike, go to a dance, go to the zoo. Your in our hearts and our prayers.

    Your friend Taylor Marie (her mommy too!)

    ReplyDelete
  40. What a couragous couple and thank you so much for sharing a part of your daughter's life with us. Thank you for sharing the information and getting the word out about this disorder. It could prevent others from going through what your precious daughter is having to endure. God Bless you and you little girl she is truly a gift from God. I cannot express enough how my heart was touched as I watch this and how it just melts at each frame watching each episode you post of your daughter's days. God be with you each and every day!!!!!

    ReplyDelete
  41. Hello little avery :-) you are a beautiful amazing angel! I am so glad to have met you, you will be in my prayers xoxoxo

    ReplyDelete
  42. I just want to say that you have the most wonderful parents a little one like you could ever have. Your blog not only made me a bit misty eyed, but caused me to smile and laugh too...especially the comment about the "angry Canadian woman." You are a little sweet pea!!! Sending some love and hugs your way!!

    ReplyDelete
  43. I just read your blog... My prayers are with you and especially your mommy and daddy who will miss you so much! You will be going to a happier most awesomest place... Your mommy and daddy get to stay here for a little while longer, but they will be with you again. They will find you.. I will spread your word in New Mexico...
    Lucy

    ReplyDelete
  44. Hi Avery, I just read ur amazing story!!! I think your a little angel and you are very inspirational. Being a 11/11/1985 baby I feel like you and I have a special bond. I can honestly say that you made my day :-) God bless you and your family, All of my love goes to you <3 Love always Teresa

    ReplyDelete
  45. Make sure that anyone wanting to get tested gets a pre-authorization from their insurance. Depending on their definition of "medical necessity" they may say it's covered just like other tests because they don't know, but when it goes through their system they may decide not to cover it. Also, the doctor that orders the test needs to make sure they use the proper diagnostic codes so it will get paid. And even then, it may still get denied and need to be appealed with proper documentation. Always get a pre-auth in writing or a reference number or something like that. genetic tests can be very expensive and difficult to get paid.

    Thank you for sharing your family's strength! I wish you well and will share your blog.

    ReplyDelete
  46. Meus salus satus hic. My salvation starts here. God bless your family thru your courageous struggle to bring awareness to this.

    ReplyDelete
  47. Avery,

    I have tears in my eyes reading about you tonight. I have six beautiful children of my own, the youngest being 9 months old. I kiss and hug my babies every minute of every day but tonight that hug will last a bit longer because of you and your story. Your parents are very brave and special. You are a beautiful baby and you will forever be in our hearts. You have six friends here in Florida pulling for you and tomorrow we will tell our Grandma your story as well. We are sure she will also pass it onto others. Thank you for reminding us what life is all about.....living it to the fullest and loving every minute of it.

    ReplyDelete
  48. I just found your blog last night and have spent the last few hours reading all the different entries and watching the videos. You are an amazing little girl with the best most caring parents and family I have ever had the pleasure of "meeting" (albeit it's only on line). I will keep following your story. Just remember to concentrate on only the good things that happen, just let the rest wash over you like a gentle rain - you'll get a little bit wet but nothing that you can't handle. You're in my heart now and in my prayers, may God bless you and your family.

    ReplyDelete
  49. To the Canahuati,Family...Sometimes we don't know why certain things happen but they...I am so proud of you for not staying in that fear and depression when you first heard of this....God is the author and finisher of all of us and if you have continue to pray for the healing of Avery and if you have not begin too....Sometimes God does things to bring us closer to him...(wake up calls) Turn to him in this time and look to him for answers....If you do they will be revealed to you...I hope that in this you do see the love that God has for all of us......God Bless you all........ :)

    ReplyDelete
  50. Anti-sense SMA Therapy (learnaboutsma.org)

    Hello Avery, and family. I imagine that you are doing everything possible to make the best of a difficult situation. I had only been recently aware of SMA because my laboratory has developed a therapy. I don't know its applicability in your case, or if you already are aware of it, but I would be remiss if I did not at least mention this to you. As you can see from the URL I have left, this is a legitimate therapy and we have worked with the SMA foundation to make this information availible to the public.

    ReplyDelete
  51. Bucket list items I recommend, ride the dog like a small horse, ride a real horse, feed the ducks at the park, watch a sunset with a friend or two.

    Keep fighting the fight, all of us are in your corner as back up kiddo.

    ReplyDelete
  52. Avery, you are beautiful and I love your smile! Your family has amazing strength and humor. Thank you for sharing your story. You and your family will be an inspiration to many, for a very long time. Keep smiling and living every day to the fullest.

    ReplyDelete
  53. Dear Avery, you rock! I love your blog, especially the part about your Mommy thinking she might have to "get ghetto up in here.". I know egg-sacttly what she means! It's basically what Mommies do when they really love their babies and they have to protect them from like mean teachers or like a nasty situation. I'm so relieved she didn't have to because you are SO ROCKING' that pink bow and i would hate to see your Mommy throw it across the room or use it as a strangling device. We love you Avery! You are a blessing.

    ReplyDelete
  54. After 4 miscarriages, one of the tests recommended by my new doctor in Colorado was SMA! (which none of my doctors here in MD recommended....shame on them!)

    I did find out that I was negative but yesterday got thr bill for my test. Fingers crossed my insurance company covers it....if not well, at least I know now that I need to help spread the word about SMA.

    Thanks for your wonderful stories Avery.....they are so inspiring. Off to tell all my friends trying to have babies about SMA.

    ReplyDelete
  55. Good Sunday Morning.just read the story of your little precious angel Avery.its heartwarming and gut wrenching to see you doing the things and sharing with us.all the while i was reading,i wondered if a ride in a semi truck would make Avery happy....the company i drive for just received a brand new Peterbilt,this week it will be all lettered and painted up for BEYONDBOOBS a breast cancer education/awareness group here in Williamsburg Va....they have a facebook page.maybe if your interested you can contact them and arrange all the details.....may God grant you all your bucketlist wishes and more Avery and family

    ReplyDelete
  56. I can not imagine where such a beautiful family gets the strength. This little one will never know about the lives she has touched. I have to say thank you for touching mine.

    ReplyDelete
  57. Best wishes and enjoy everyday! Zoe (3 years old) says hello and can we play?!
    MUCH LOVE!
    Amy and Zoe Jane

    ReplyDelete
  58. Avery,
    You are such an inspiration to everyone! Everything about you is beautiful. Would love for you to add "Visit Kansas City, MO and enjoy some KC BBQ" to your bucket list. If there is anything I can help with on your bucket list, just let me know. Sending smiles and prayers your way.
    Hugs & Kisses,
    Tommi

    ReplyDelete
  59. Fallen Leaves

    Leaves that blow from autumn trees
    Prepare the way for winter freeze
    To chart the paths of moving time
    A cycle plays out nature's rhyme

    Though sometimes leaves do fall in spring
    The sound's an unfamiliar ring
    New from buds the leaves they form
    They grow amidst the sun so warm

    So why do some release their bounds?
    And tumble gently towards the ground
    To disconnect from what they know
    And sacrifice the chance to grow

    Only God can know these things
    And why he calls for leaves in spring
    Perhaps leaves choose to ride the wind
    To find some place to start again

    ReplyDelete
  60. Memories

    Build for me a memory
    One day at a time
    Sing me songs and teach me things
    And read me nursery rhymes

    Every day is important
    A lifetime dawn to dusk
    Each moment needs a picture
    To you I will entrust

    How old does someone have to be
    To change the world we know
    To be an example to others
    In the courage that we show

    I don’t yet have the answer
    Perhaps not meant to be
    But now you have a memory
    Of the life you shared with me

    ReplyDelete
  61. That was BEAUTIFUl..... I am a mother and couldn't imagine how that would feel,to have an estimate/time to loose your child. Life is so precious which is why we should all embrace it ! Support SMA,and enjoy your life.
    Life..hummm let me say that if you were able to have children,we must say tha was the best Blessing received.
    I'm so emotional all I could do is look at her photos (Avery) it brings me to tears.
    I may not know your family but somewhere in my HEART I do! I commend your parents for being sooooo strong,please enjoy your bucket list little ANGEL. God bless you all.

    ReplyDelete
  62. Hi Avery!!
    How are you doing? I hope you and your family are okay. And is a bucket list like a to do list? If so is come to England on it? I can show you around London and Kent! My treat. Only wait a few months cos its REALLY cold at the moment! We had a months worth of rain in a day today.. :/ can you believe it? I bet its lovely and warm where you are!
    Hang in there you brave, special, beautiful little girl. I'll be thinking of you.
    Love
    Izzy from aylesford in Kent, England
    xoxoxoxoxoxoxoxoxoxoxoxx

    ReplyDelete
  63. Good Evening I was at home watching CNN and watching your story...
    Being a child of muscular dystrophy, if I had a $1.00 every time a Doctor told my family and self I would not make it past 6, then 7 then 9 and on and on...We would be crazy rich!!

    After while I just was determined to live my life to the most full as today was my rainy day.

    52 years later, graduated from UCLA, working for a Fortune 500 Company, happy married 14 + years, an amazing life and all because I had Parents like yourself that just created a amazing support system.

    Dont give up, enjoy each and everyday and believe!



    Sincerely,
    Timm & Crystal
    Follow us @
    www.facebook.com/crystalandtimm
    http://twitter.com/RollPositive

    ReplyDelete
  64. Talk about turning lemons into lemonade! The Canahuati family is 100% inspirational!!!

    Keeping you in our thoughts and prayers,
    Lynn Nankervis
    The Brady Bunch Plus One
    www.bradybunchplus1.blogspot.com

    ReplyDelete
  65. Your story has really touched my morning in a way that I will cherish from now on. I have often wondered why God would allow such a thing to happen to a baby and have even become angry with God when seeing children who are stricken in such a way. It still hurts me when I see a child suffer, however I have come to realize that life is always Gods plan and not mine. I have also realized that one day of life is the the blessing that we all share together every day. When my brother passed away my family was so torn with emotion and it was almost more than any of us wanted to deal with. Our pastor met with us in private to pray and at the end of his prayer he prayed...and God, please help us to to be thankful for this life that you chose to share with us. For it is only because of you that we stand here today and celebrate the time that we are blessed to have. Please make us stronger in our love for one another and strengthen our understanding of just how strong your love is for us. For no matter how mush we love one another it is you who loves us more and it is you who loved us first. Thank you for sharing your story and I know that Gods plan is taking place in each of our lives because of your daughter. God Bless.

    ReplyDelete
  66. Oh my goodness, Miss Avery have a got some good news for you but its a secret so keep this little tidbit to yourself. *whispers* I happen to have serious internet addiction problems and will do everything I can to spread your story to some super hot looking guys who have a TON of followers on Twitter. If you were just a little older, we could talk about how amazing Adam Levine's tattoos are and listen to some music. For now, I'm going to do what I can to let everyone know about this list you have going and see if I can't get you some fame. <3

    Your friend in IN ~ Megan

    ReplyDelete
  67. Avery, your story has touched my heart and brought tears to my eyes (you can cross "make 240 lb grown man in business attire cry at his desk" off your bucket list now!) And though the short duration of your precious little life is sad, the tears were not of pity or melancholy, but rather they were evoked by the strength and love and LIFE that is so evident in you, your mommy and daddy, and all your friends and family. You are truly an inspiration, and I will keep you and your family in my thoughts and prayers. (For your tally: $50 donation to FightSMA.org)

    ReplyDelete
  68. A friend of mine sent me this link on Facebook. Being a parent and having a blog myself I absolutely had to share you story. I posted a link on my blog, angandshannon.blogspot.com, to get to yours. I hope that it will help bring awareness to more people out there. I am also going to post your link on our Facebook page as well, "Two Mountain Mamas". Best wishes to your family and your BEAUTIFUL baby girl.

    ReplyDelete
  69. I will pray that God's blessings continue to light your way. Thank you Avery for humbling me. Your suffering has caused me to turn to God and pray. I believe that your acceptance of this suffering has saved my soul.

    I hope my prayers will make this life easier for you and your mommy and daddy.

    ReplyDelete
  70. My name is Everett T. Mills. I was diagnosed at the age of 15 months with SMA type 2. I had already lost the use of my legs and my mother was told I would not live past the age of 15. I am now 35 years old. I have been blessed enough to graduate high school with honors, and at the top of my class, proudly display my paintings I've painted with the help of adaptive equipment and communicate with loved ones via the internet also, using adaptive equipment. My brother Alex was also diagnosed with SMA type 3 and is still living at home and very happy. My life is different than most, for the fact that I am on a respirator, fed via g-tube and I do not have the use of most of my muscles, but with the help from others and my undying determination I live a very happy life. I currently reside in a beautiful home with 4 other people and 24 hour nursing in Massachusetts. I skype and talk with my family throughout every day, I attend dances and have made alot of new friends, I surf the internet, watch sports on TV and attend church services in the community, listen to my ipod, play video games and harass the nurses where I live. Im sure life for me without SMA would have been much different, but I can honestly say I'm happy with what I have and never feel bad for myself for what I don't have. I'm hoping that my post to you will give you hope for the life that Avery can lead. Doctors are not always right with the timelines they give. Only the man above determines when it's your time and I'm proof of that. I would love to answer any questions you have or just say hello. My address is 43 Dunster Road, Holliston Massachusetts 01746. God bless Avery and her family :-)

    ReplyDelete
  71. Avery, you are a wonderful inspiration to those who have suffered the cruelties that life sometimes offers. You are a beautiful human being and a true angel of this world. Your message has been read and will spread all over the world. I wish you the miracle of all miracles as you continue your battle with SMA. You are lucky and fortunate to have the parents and support group around you as you face this struggle. Though I will never meet you face to face, I will always have a place for you in my own heart as I continue to make others aware of this disease so that maybe one day, children will be able to grow up and live healthy and happy lives free of disease. Just know that you will have had a huge part in this cause. May you and your family be blessed forever:)

    ReplyDelete
  72. Avery, you are a wonderful inspiration to those who have suffered the cruelties that life sometimes offers. You are a beautiful human being and a true angel of this world. Your message has been read and will spread all over the world. I wish you the miracle of all miracles as you continue your battle with SMA. You are lucky and fortunate to have the parents and support group around you as you face this struggle. Though I will never meet you face to face, I will always have a place for you in my own heart as I continue to make others aware of this disease so that maybe one day, children will be able to grow up and live healthy and happy lives free of disease. Just know that you will have had a huge part in this cause. May you and your family be blessed forever:)

    ReplyDelete
  73. Avery, you are a wonderful inspiration to those who have suffered the cruelties that life sometimes offers. You are a beautiful human being and a true angel of this world. Your message has been read and will spread all over the world. I wish you the miracle of all miracles as you continue your battle with SMA. You are lucky and fortunate to have the parents and support group around you as you face this struggle. Though I will never meet you face to face, I will always have a place for you in my own heart as I continue to make others aware of this disease so that maybe one day, children will be able to grow up and live healthy and happy lives free of disease. Just know that you will have had a huge part in this cause. May you and your family be blessed forever:)

    ReplyDelete
  74. Avery, you are a wonderful inspiration to those who have suffered the cruelties that life sometimes offers. You are a beautiful human being and a true angel of this world. Your message has been read and will spread all over the world. I wish you the miracle of all miracles as you continue your battle with SMA. You are lucky and fortunate to have the parents and support group around you as you face this struggle. Though I will never meet you face to face, I will always have a place for you in my own heart as I continue to make others aware of this disease so that maybe one day, children will be able to grow up and live healthy and happy lives free of disease. Just know that you will have had a huge part in this cause. May you and your family be blessed forever:)

    ReplyDelete
  75. Avery, you are a wonderful inspiration to those who have suffered the cruelties that life sometimes offers. You are a beautiful human being and a true angel of this world. Your message has been read and will spread all over the world. I wish you the miracle of all miracles as you continue your battle with SMA. You are lucky and fortunate to have the parents and support group around you as you face this struggle. Though I will never meet you face to face, I will always have a place for you in my own heart as I continue to make others aware of this disease so that maybe one day, children will be able to grow up and live healthy and happy lives free of disease. Just know that you will have had a huge part in this cause. May you and your family be blessed forever:)

    ReplyDelete
  76. Avery, you are a wonderful inspiration to those who have suffered the cruelties that life sometimes offers. You are a beautiful human being and a true angel of this world. Your message has been read and will spread all over the world. I wish you the miracle of all miracles as you continue your battle with SMA. You are lucky and fortunate to have the parents and support group around you as you face this struggle. Though I will never meet you face to face, I will always have a place for you in my own heart as I continue to make others aware of this disease so that maybe one day, children will be able to grow up and live healthy and happy lives free of disease. Just know that you will have had a huge part in this cause. May you and your family be blessed forever:)

    ReplyDelete
  77. Sweet Avery - your story has stolen my heart! I too have a little girl named Avery and she is almost 7 months old. We live right down the street from you in Sugar Land. Each morning when I thank God that my Avery woke up happy & healthy, I pray the same thing for YOU Avery. I cannot imagine walking in your shoes, but I do know that God is a healer - a miracle worker - and I'm praying everyday that the progression of SMA not only stops in its tracks, but reverses completely. I know this may seem impossible, but I'm believing God for this. Stay strong baby girl and keep smiling for those awesome parents of yours. Love, hugs, and kisses...

    ReplyDelete
  78. Wow! What an amazing story. Can't wait to get home and hug my children. I have been suffering from insane depression over the past few months and this story made my anxiety a little more mangeable. No matter what I am going through, I am glad to have healthy children. What a precious little angel this girl is.

    ReplyDelete
  79. Dear little Avery and family,
    You are in my prayers. May God hold you in the palms of his hands and bless you and your Mommy and Daddy. You are an angel of heaven sent to educate the world of this horrible disease. Be strong, I hope you accomplish great things.

    ReplyDelete
  80. I would really like to talk to this family, I have that same disease and I was diagnosed when I was six months old... I'm now 31. I just hope to offer them some encouragement if I can find out how to contact them.

    ReplyDelete
  81. Avery,
    I think you are very sweet and am so happy you are doing the things you should be doing. your story makes me sad but also realize how precious life really is. I have a daughter who just turned 4 months old and I cherish her now probably more than I did the day she was born. Have faith and hope that things will work out and you are doing what you set out to do, and thats make people open their eyes and know whats really important. You are in my heart and prayers.

    ReplyDelete
  82. Hi! I am a polymer clay artist. I was wondering if I could make a little replica of Avery from a favorite picture? I thought maybe "pose for a statue" could be added to the list and I would be honored to do it :)

    ReplyDelete
  83. As the grandmother of a special needs grandson....I know there are angels around us~ and you are holding one in your arms. Keep celebrating your 'everyday' miracles....they are the most beautiful ones of all. Blessings from Canada.

    ReplyDelete
  84. The Lord, God of Heaven has a special place for this little one. Do not be anxious about anything, but take your thoughts and concerns to the Lord

    ReplyDelete
  85. It's a shame that some of the comments have to be critical. I know babies pass everyday, but this little girl caught my attention and the hearts of millions. So put away the negative and show a little respect out there. Good luck to you and your little Avery guys!!!

    Avery for president!!!

    ReplyDelete
  86. http://www.shamana.co.uk/siberian_shamanism/index.html

    Please take her to see a Siberian Shaman

    ReplyDelete
  87. Avery, you can check of your bucket list the ability to have an impact on thousands of people just by telling your story. Live, girlfriend, LIVE!

    ReplyDelete
  88. God bless you both, stay strong!

    ReplyDelete
  89. With God everything is possible. I know that even as you write this, you have a desire in your heart and my prayer is, MAY GOD GRANT YOUR HEART'S DESIRE. Stay blessed and may God add life into your days.

    ReplyDelete
  90. I'm sorry this comes after she left you, but I made my donation and shared the link with friends/family. I will continue to pray for strength for your family because as I type this I am crying and she isn't even my daughter! By sharing your story (and Avery's), I know you encouraged people to live life a little more because you inspired me to do so. I don't know you and I didn't know Avery, but through the few blogs I read, I grew to love your family. Love, Connie.

    ReplyDelete
  91. Avery,
    I normally avoid this topic because you are just a baby and should not have to go through this nor should your parents have to go through the added stress in life that was given to them.

    All I want for you is to become well and have a normal life like the rest of us going through ours and to learn from mistakes when you grow up and not repeat what others do but to do what you know is right.
    Stay strong and God bless you

    Scott

    ReplyDelete
  92. I am so sorry.

    There is a saying that one calls a person who has lost their parents an orphan, a spouse a widow/er, but losing a child is so horrible, there isn't a word for it.

    Your beautiful girl lived and loved/is beloved more in months than some of us have lived/loved in decades. May you heal enough to celebrate again soon.

    ReplyDelete
  93. I am so very, very sorry about Avery's passing. May you somehow find peace and comfort in your memories and in knowing what an impact Avery had on so many people. God Bless!

    ReplyDelete
  94. To Mommy & Daddy Canahuati - I am heart broken for you that you have lost your precious girl! What you have done here has touched so many lives and I do pray that your quest for world-wide SMA awareness AND a cure will be attained much sooner than later.

    You were blessed with a treasure from above! I, too, am thankful that SMA did not take Avery's smile away! I pray that God will comfort you both, while you go through this difficult time.

    In His love,
    Julie from Austin

    ReplyDelete
  95. What a pretty child she was. With 8 healthy grandchildren it brought tears to my eyes to see your story and made a contribution in her name. I hope you are able to reach your goal

    ReplyDelete
  96. I feel so very blessed to have read your daily blog. Thank you for sharing your life with me. I have shared your story to all who will listen, and as I write this, I am in tears. Avery you were so loved by so many people you have never met.

    To Mommy and Daddy.... what great courage and love you have. I hope that you may find peace. Please know, believe and feel all of the hugs and prayers that people are sending you and your family.
    God Bless, Richard from OKC

    ReplyDelete
  97. I am so, so sorry that you have lost Avery. What a beautiful smile she has! Just remember, that now she is smiling down on you from heaven. God bless you now and always.

    ReplyDelete
  98. Que descanse en paz baby Avery. Her life touched many and will help create awareness of these condition. May God bless and comfort you.

    ReplyDelete
  99. My heart is so heavy with sorrow at the passing of sweet beautiful Avery. You are in my thoughts and prayers at this most difficult time in your lives. May you find healing in the love others have expressed and im knowing in such a short time Avery has toched the hearts of so many. May God give you the strenghth to keep focused on finding a cure. To help all the other little Averys out there. Special parents you are and you too have touched me deeply. Avery could not have had better parents on this journey. Being a parent who has also lost a child I know your grief. Undescribable it is. I felt like breathing was no longer an automatic function. Time for healing moved at a snails pace. But it does come and one day you will remember Avery and will be able to smile at the memories you helped create. God bless your family and sweet precious Avery.

    ReplyDelete
  100. Thank you for sharing your beloved Avery with the world. You all have given the ultimate sacrifice to SMA and I hope someday there is a cure for all of Avery's friends. My heartfelt condolences to you. Your daugher leaves amazing memories for you. With Blessings, Sharon in Washington State

    ReplyDelete
  101. Avery, you are a beautiful angel. My thoughts and prayers are with the entire family.

    ReplyDelete
  102. I was so shocked and saddened to see that Avery passed. I just voted today for her to be on the Ellen show. You two are obviously wonderful parents, and Avery was so blessed to have you encouraging her to make every moment count. She did just that; made every moment count and I know inspired many to do the same. May you both hold her in your hearts forever as she has affected many hearts from around the globe with her mission of raising awareness for SMA. Prayers for you and yours.....

    ReplyDelete
  103. I'm so sorry for your loss. What a sweet little girl.

    ReplyDelete
  104. I have followed Avery since last week. I have not met her but I instantly fell in love with her smile. I am deeply crushed to hear about her passing. My heart is shattered in pieces. I am a mother of 4 and my children mean the world to me. I cannot imagine how much pain your family is going through.

    To Avery: Your life, though short, was an amazing journey of courage and love. You have shown people how precious life is and how a life should be lived to the fullest. You have inspired countless people and have fulfilled your mission in raising awareness for SMA. Some people wont be able to do in a hundred years what you have achieved in a couple of months. You will live on in your family and in all the lives you've touched including ours. Fly little angel! You are now free from pain and this imperfect world. Rest in the loving arms of God! You are finally home! We will never forget your perfect smile! We love you!

    To Avery's Mom and Dad: I am so sorry for your loss. I know that words are not enough to comfort you in this difficult time but let me express our sincere condolences to your family.

    I really admire your courage and strength. You helped Avery live a full life and for that you two are heroes! Yours is a perfect example of unconditional parental love. Kudos to both of you!
    Because of you, Avery and her legacy will live on in the hearts of countless people you have touched and inspired.

    We will pray for your family and we will help spread awareness about SMA in our country in Avery's honor.

    Love,

    May Unchuan and family from the Philippines
    with Charlie,Erika,Miguel,Monika, and Marianna

    ReplyDelete
  105. I am so truly sorry for your loss and cannot imagine what you must be going through. I want to thank you for sharing Avery's story. Both you and your daughter are an inspiration to me as a mother. it takes an enormous amount of courage to face something like this and to continue on to educate others and make the most of the time you have. You have not only educated me on SMA but also serve as a reminder of just how precious life is and how lucky one is not only to be blessed with a child but a healthy one at that. People get so caught up in having a boy or a girl, or blue or brown eyes they forget that having a child who can walk and talk is a blessing in itself. Thank you for sharing your story and reminding everyone just how precious life is. Your daughter was a beautiful little girl and looked so happy - i can only imagine how difficult these 5 months have been for you and what you are currently going through. i do know that, from looking at your pictures, you gave that adorable little lady and amazing 5 months of life...

    ReplyDelete
  106. I am so truly sorry for your loss and cannot imagine what you must be going through. I want to thank you for sharing Avery's story. Both you and your daughter are an inspiration to me as a mother. it takes an enormous amount of courage to face something like this and to continue on to educate others and make the most of the time you have.

    ReplyDelete
  107. To Avery's Mommy & Daddy,

    You two are an inspiration all your own...through this difficult time you somehow still keep going to do more and give more in honor of Avery. You are so blessed even in this moment of pain and Avery is proud of the two of you. What remarkable parents she had for the while that she was here.

    Namaste and many blessings,

    Stephanie Fuller

    ReplyDelete
  108. I am in tears for you but i know she looking down on you and yours!!! I loved her and i did not know her. What a beautiful spirit she had and still has!!!!!

    ReplyDelete
  109. I am so sad to hear the news. My Prayers are for Avery and her beloved family. I will never forget her story.

    ReplyDelete
  110. I have never cried so long or so hard over a story involving someone I have never met. I am sorry from the bottom depths of my heart for your loss of your beautiful Avery. How wonderful to know that you brought her the joy that is so apparent on her face. Thank you so much for raising my awareness of this devastating disease, and thank you for opening my eyes to what really counts in life. I am going to continue Avery's bucket list with my own family, making every moment a memory. Life is too short and unexpected to lose yourself in the things that won't matter tomorrow. My heart goes out to you amazingly loving parents. Your entire family is one of angels. May the love you had for your daughter and peace fill your aching hearts until you are reunited.

    ReplyDelete
  111. Wow. As much as we preach about prevention in my dealings with kids, the health care industry still refuses to do what "daddy" illustrated above with the cake example. It such a sad thing what that poor girl went through, but her parents gave her such a beautiful life and I am sure if she was healthy, they would have nurtured a wonderful human being into adulthood. It is amazing based on the poll above how many people do NOT know about this and the odds are rather high. There are not enough thank yous for what you have done Avery and may you have gone peacefully to your family above. To the parents: A LOT of respect from all of us other parents on how you handled the situation.

    ReplyDelete
  112. I may never have met you in this life, but I sure will in the next and I will give you a great big hug and say, "Atta girl. You sure did good!" What a blessing she was and will remain to be!

    ReplyDelete
  113. I have it on high authority, Avery is sporting some pretty sweet wings right now! What a beautiful life. My prayers go out to you all.

    Rest In Peace Avery! You are a Sweet, Beautiful Angel.

    Peace!

    ReplyDelete
  114. I'm so sorry to hear that your beautiful daughter has passed. It breaks my heart as a mom of your loss and what your family must be feeling right now.

    Wanted to let you know how much admiration I have for you to face this the way you have been - with grace and courage. Thank you for letting us know about SMA! You will be in our prayers Avery.

    ReplyDelete
  115. I have been following your blog since you first posted it. I am so sorry for your loss. You are all in my heart and in my prayers. I am greatful to be able to be educated on this matter. I hope others get educated also. When I first read your blog I cried. My heart ached for all of you. As it will for a long time to come. I will follow your blogs from here on out. May GOD be with you and your families through all you are going through. Sending much love

    Jane

    ReplyDelete
  116. Avery, you lived such a short time, but such a profound impact you have had on this world! You have touched so many people, and have changed many lives through your own, and you will continue to do so. Your work in this world is complete, and you have earned your rest. Now it is the continued work of those left behind to take what we have learned from you, and make this world a better place. Your family is fortunate to have you as their angel in Heaven. Thank you for so unselfishly sharing of yourself. I am humbled by the depth of your impact on this world in such a brief time. God bless you and your family.

    ReplyDelete
  117. Avery, you are a Blessing, I just wished I had known you sooner! You will live forever in my mind and in my heart. Take care Little Angel!

    ReplyDelete
  118. I,too, am so sorry Avery has left this world. Rest assured that she made a tremendous impact on the lives of many of us and has certainly raised awareness of SMA! You have shared your story in such a wonderful way - thankyou. I am glad Avery accomplished so much on her bucket list. God bless you all and may Avery rest in peace.

    ReplyDelete
  119. I am so sorry for your loss. You are in my prayers. SMA is a terrible, heartbreaking condition. My niece passed away at 8 months from Type 1. My heart aches for families and children which have been afflicted by this. I hope you are able to find peace. May God be with you and your family. You, my sister and your daughters are an inspiration to me.

    Christi

    ReplyDelete
  120. Words can not describe how heavy my heart is for you and your wife. Since my husband found Avery's blog we have been following her. We wept together today as we read her last words and mourned for such a sweet angel we never knew but adored so much. She inspired us beyond belief and you, as parents, inspired us, too. Every day with our 9 month old has been cherished a little more. We hope that some day our daughter does something as important and inspirational and selfless as little Avery did with her all too short, but very precious life. Find comfort in each other and knowing how many lives Avery touched, how many people she educated and how very special her time here on Earth was. I hope "be someone's Hero" was on her list and it's been crossed off; because she was definitely our little Hero. Thank you for sharing her with us and letting us love her with you. Hugs and prayers to your family,

    ReplyDelete
  121. That is the most adorable baby i have ever seen. I am so sorry for you loss, but hope is what keeps every human going and just keep spreading the word for SMA and you guys deserve a round of applause for your courage and bravery. May God bless your little angel and your entire family.

    Umair Saeed

    ReplyDelete
  122. Hello, I saw the post on Yahoo and wanted to check out your blog. Avery, I think your parents are very wonderful, and I'm so sorry to hear that you passed away. My brother Ryan passed away a few years ago, so maybe you can hang out with him in heaven. I will pray for your family, and wanted to let you know that your memory will warm my heart forever. Love, Beverley

    ReplyDelete
  123. I hope this poem kinda helps,
    http://www.kissedbyanangel.com/loan/

    ReplyDelete
  124. Praying for you and your husband and family that you may be comforted, to know that Avery is in the arms of Jesus. Let's pray for a cure for SMA . I am enclosing a beautiful poem. Love
    http://youtu.be/3c_U0ctrJDo

    ReplyDelete
  125. My thoughts and prayers go out to you and your family. Avery was such beautiful baby. Just know she is now watching over mommy and daddy.

    ReplyDelete
  126. Sorry to hear about Avery. Just know that her five months were five months filled with amazing things. In her five months, she did more things than some people do over the course of several years. What an amazing child.

    ReplyDelete
  127. I am so sorry for your loss. Avery was a beautiful little girl and so blessed to have such wonderful parents.
    Thank you for the work that you are doing to raise awareness on this issue. I did not know about it or that there are so many diagnostic tests for it.
    Glod bless and may you have peace in your hearts.
    I can not stop crying as I read this blog.

    Dal

    ReplyDelete
  128. RIP Baby Avery God Bless and Keep those you left behind, may you rest peacefully in the arms of the angels

    ReplyDelete
  129. ☜♡☞ Death leaves a heartache no one can heal. Love leaves Precious Memories no one can steal. ☜♡☞

    God bless.

    Gloria

    ReplyDelete
  130. “Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.” Eskimo Proverb

    Thank you so much for sharing Avery’s short but JOYFUL life with us. Thank you for taking an unbearable situation and bringing positive to the world. Heaven has definitely gained an angel!

    May the good Lord wrap you in the warm comfort of knowing baby Avery is at his side. You’ll be together again. Take comfort also in the good you’ve done for others. Bless you Avery’s Mommy and Daddy. My prayers are with you and yours.

    ReplyDelete
  131. My god grant you peace during this difficult time. You are wonderful parents and were blessed with a gift that was taken to soon.

    ReplyDelete
  132. Thank you to beautiful Avery for helping make the world more aware of SMA, she surely did a bunch of GREAT in a very short period of time. My prayers for her family, take comfort in the thought that you brought an angel into the world who has (and will) do so much good for others.

    ReplyDelete
  133. I will pray that God's blessings continue to light your way.

    ReplyDelete
  134. Avery meet Alexander...Alexander meet Avery...Alexander has been in heaven since Jan.6th,2012 he was 8 months old. Play, love, laugh and be surrounded by those of us who loved you. Look down on us and show us your smiles in the sun and rainbows. You both were so precious to us all. You both taught us so much in your short time here on earth. May God be with you both and with all that you leave behind. The time till we meet again will be only a fleeting moment to you,..to us it will be a lifetime. But soon, you will all be together. Love, Alexander's Nana.

    Alexander Noble Cabanayan
    April 25,2011-Jan 6, 2012

    ReplyDelete
  135. There is nothing one can say at times like these. Except that you were so lucky to have that little angel for the brief time that you had her and her smile and memory will educate all of us and we will keep the fight going. Little Avery made such a huge impact on all of us. May you cherish all the great times and let's keep on fighting for Avery.

    Lissette D Chicago

    ReplyDelete
  136. RIP Avery! Your story has touched me so much that before I end up pregnant I am going to make sure that I get tested for SMA. Even if I have it and end up with a little one with it, I will hope that they are like you. Meaning they smile all the time. RIP and I hope to someday meet you.

    ReplyDelete
  137. To the family, my name is Ashley. I had just gotten out of the army and have been going through a hard time. I thought I had it bad, put when I open yahoo I saw Avery's story. It really touched me more than I could explain. No matter how are my life is there is always someone who is hurting more. To you the parents of baby Avery, you both knew you were blessed with your beautiful baby girl for just a short time, but instead of wasting that time crying, you made the most of it by living Avery's short life to the fullest. I cried when I read about her passing, but at least she is suffering no more. That baby and you the parents brought new hope to me that even when life is hard to still live life and every day to the fullest because you will never know when it will be your last. My prayers go out to the family of Avery and to her parents. I never heard of SMA but the blog really opened my eyes to the problem. I will help in any way I can to spread the word. Thank you Avery and thank you to the parents who made her story know. It really has changed my life.

    ReplyDelete
  138. I love you Avery, I hope we meet across the rainbow bridge....

    ******Everything is Stars,******

    Your friend , Aila

    ReplyDelete
  139. may god bless you and keep you in his light. your story touched my heart

    ReplyDelete
  140. I am so incredibly sorry for your loss. My heart is breaking for you. I just read your entire blog, and I am truly at a loss of words. I know there are no words right now that can comfort you, but please know that so many people love you. You are truly an inspiration to us all. I want you to know that your awareness is working.. I just told my fiance' a minute ago that I want us to go get tested for SMA before we start trying to have a child.

    You will both be in my thoughts and prayers. I read a poem one time that explained that God doesn't take our loved ones away from us because he wants to, he does it because he has to. He isn't happy when he takes them from us either. His heart breaks each time, along with ours. It stated that when you are sitting there crying, God is standing over you with his hand upon your shoulder crying with you.

    Tiny Angels rest your wings
    sit with me for awhile.
    How I long to hold your hand,
    And see your tender smile.
    Tiny Angel, look at me,
    I want this image clear....
    That I will forget your precious face
    Is my biggest fear.
    Tiny Angel can you tell me,
    Why you have gone away?
    You weren't here for very long....
    Why is it, you couldn't stay?
    Tiny Angel shook his head,
    "These things I do not know....
    But I do know that you love me,
    And that I love you so".

    Stay strong. We are all with you. God bless.

    ReplyDelete
  141. God bless you. My two month old daughter died of SMA 27 years ago. Like your family, we had never heard of it. I pray they find a cure.

    ReplyDelete
  142. God bless you Avery. We will all miss you, but know you are watching over us, and taking care of us. Thank you, mom and dad, for taking such good care of her and making her life paradise while she was dealing with SMA. For Avery, we will all work harder to get rid of SMA.

    Stay strong. Avery was and will always be an angel. We will always be with you.

    ReplyDelete
  143. God has blessed the both of you with such a special gift. And that gift will continue as you have touched a world of people hearts and I"m sure the world of people will continue to touch yours. Don't be afraid of the future, you're more educated now because of your little gift. I hope you have a beautiful future for many many years to come.

    ReplyDelete
  144. Hello,

    I just saw the report on the news here in st louis a couple of days ago. As i sit here in tears I am struggling to find words to say. I am so sorry to hear of your loss and as soon as I saw the report a few days ago here i wentt into tears and began to cry and pray for Avery and all of your family. I am a father of 3 girls one 6 months old and I honestly cant imagine the pain you are going through. I can tell you Almighty God has put your family on my heart and I will continue to pray for you. In ther few days I knew of Avery and her story God touched me and put your family on my heart and I want to say God bless you and keep you! I know Almighty God will take special care of Avery. I know by what god has put on my heart that he has something special in store for your family. Please don't give up the fight for a cure. We love you guys and God Bless!

    Angelo Buehrlen & Family St Louis Mo.

    ReplyDelete
  145. It is with a heavy heart and through tears of the pangs of sorrow I say goodbye to you, Avery... my little girl Raelin will help your bucket list.... I promise you that.

    In every life there is light, and yours has shone so brightly, has shown so many that there is more in the doing than in the fixating on what cannot be done. I know you are OK, now, I know you are happy.... and I know you are dearly loved by all you knew, and adored by many you did not.



    To Avery's Mommy and Daddy:

    You are an inspiration to the world. I give my deepest respect, and my thanks for your strength for Avery, and example for many others.
    Please.... remember her, as I know without doubt you will, always - and let that remembrance keep the two of you strong with each other. You have been through so much.... let it bond you ever closer. Avery wants a sister, I would wager.

    In loving honor of an angle,
    Rufus Hearn

    ReplyDelete
  146. My heart goes out to your family. I had not heard of this until tonight. I read Avery’s “Bucket List” so touching. I pray that God gives you the strength to continue writing what she ask you to share. I also pray that you and your wife will have peace in this time in your life, and he will supply the money to reach your goal. God be with you today and everyday!!!!!!!!!

    ReplyDelete
  147. I am so sorry, words fail me at this time, I have been following this very special blog and right now I can't find the words to express my deep sorrow.
    I am sure God has a very soft pillow for you darling and your wings will be golden, rest well and until we meet God Bless x

    ReplyDelete
  148. if humans had the ability to give back life sweet angel would be so strong right now with alot of life in her but it is Gods will that she gets her rest. May God give mommy and daddy strength to get through sweet angels passing and may her beautiful soul rest in eternal peace.
    its amazing how i knew about her just last week but i feel like she was my very own.God picks the most beautiful flowers in his garden. sweet angel will keep watching over mum and daddy and i know they will not cry they will keep praying for her.
    REST IN PEACE ANGEL.

    ReplyDelete
  149. On April 30th I read about Avery's bucket list, also sent her a hug and a kiss, to be help her achieve the 1000 hugs and kisses. Not sure if it got posted, but here it goes again and hopefully she achieved that before going away. Here is a kiss and a hug from a puertorrican. May God be with you on this moment and for the rest of your life.

    ReplyDelete
  150. I can't put into words how my heart has broken for you. I have 4 daughters and the baby is named Avery Elizabeth. She is two, she is amazing. I will think of you and your Avery everytime my Avery checks things off her list. She is perfectly healthy ~Thank God. But we lost a baby boy in our second trimester of our pregnancy. I understand the loss, it may be difficult to compare the two but someone once told me "Grief is Grief, no matter the cause" it only hurts longer the deeper it goes. I hope you find you smile in pictures of Avery's smile. She remains, and always will very special and touched the lives of many! She mattered and she is loved all around the world. What a special gift. Peace be with you all... with love and hugs. Beth (mother of an Avery)

    ReplyDelete