Tuesday, April 17, 2012

Facts about SMA & My Weekend

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.

Is 191,000 page views in less than 7 full days a lot?  Mommy & daddy say it is a lot of people and if I stop now, I should be very proud of myself because I've reached thousands of people who'd never heard of Spinal Muscular Atrophy (SMA).  I politely told mommy & daddy that while it's nice a few thousand people are aware of SMA because of my story, I'm of  the belief that my story, along with the stories of other families with SMA and the facts about SMA, should be known by millions.  So thank you to everyone for sharing and supporting my story!  Always remember, the best way to help & the kindest gift you can give me is the gift of a broader voice.  So please continue helping me spread awareness about SMA by forwarding my blog to everyone you know.

Before I share my weekend, here are some facts about Spinal Muscular Atrophy (SMA):
1 in 40 people (that's over 7,500,000 people) in the U.S. alone are carriers of SMA.  I lost count somewhere between my big toe and my pinky toe, but doesn't that seem like an awfully BIIIIIIG number for most people to have never even heard of the #1 genetic killer of infants and children under the age of 2?  And if you think about it, that number could be significantly higher than 7.5 million.  I mean, do you recall when your last SMA carrier test was?  Or the last time an SMA carrier test was offered to you?

I know my mommy & daddy were never offered a test to see if they were SMA carriers.  Did you know you can ask your doctors to test you and your partner for the SMA carrier gene prior to conceiving children?  And did you know that if you both carry the SMA gene you can use alternative fertilization methods (ewwwwww yucky) to ensure your children will be born without SMA?  Or if you prefer, you can still try and conceive a child naturally (again, ewwwwwww), in which case you'll be susceptible to the following probabilities (proba what?):

There's a 1 in 4 chance my new friend will contract SMA; a 2 in 4 chance my new friend will be a carrier of SMA; and a 1 in 4 chance my new friend will not be effected by SMA at all.  So based on this, it's probable that a couple who have never been tested for the carrier gene, could unknowingly both be carriers and already have 1 or more healthy friends for me.  But if they decide to make me another friend, then they are susceptible to the probability figures above.

Oh and just because you have ZERO family history of SMA or any other muscular disease, that does not mean it's not in your family history.  My mommy & daddy asked all of our living relatives to go back as far as they could, and nobody could think of anyone who ever showed signs of SMA or any other muscular related diseases.  And according to daddy, Nana Sandi has a lifetime subscription to Ancestry.com and when she's not having fun with me, playing Words With Friends or Castleville (whatever that means), she's researching our family history and she couldn't find anything either.

This was my weekend...

My mommy made a new friend named Courtney whose daughter Kaitlin had SMA Type 1 like me.  Courtney told mommy that she used to put Kaitlin in the bathtub because it took this thing called gravity away and would allow Kaitlin to move her arms and legs better.  OMG, thank you Courtney for telling mommy about this because I had soooooooo much fun...


...daddy told me that I may have to make a public service announcement (huh?) apologizing for what he calls my Janet Jackson Super Bowl wardrobe malfunction moment towards the end of my bath time performance...I'm sorry?  for whatever that means.

I also received my first request to be someone's Valentine...thanks Uncle Ryan & Aunt Lacey for buying me roses the size of my head!  Daddy told me to watch out, just in case these ridiculously giant roses want to go Little Shop of Horrors on me...whatever that means.

Mommy keeps telling me to be thankful I got her looks and her personality.  Daddy keeps telling mommy she's right.  Mommy being right seems to happen a lot and if you're scoring at home, that's Mommy-4, Daddy-0.

Daddy says he lets mommy win, but I know that's not true.
Mommy-4, Me-1, Daddy-minus 2.  Daddy loses one point for lying to me and an extra point for lying to himself.
I tasted my first Cheeto, and probably my last after daddy ruined it by reading the nutritional value to me.


And probably my favorite part of the weekend was when my daddy took the advice of this nice man who asked my daddy for money at a stop light, but my daddy told him he didn't have any cash and if the nice man ever got a Wi-fi connection and a credit card machine he'd make a killing.


Me, mommy, daddy, Nana Sandi, G-Pa, and the Bormaster/Feinstein family (Grauntma Leslie, Grandpa Scooter, my Aunt's Alli, Kelly, and Kimmie, and Uncle Jeffrey) had the beeeeeeeeeeeeest time flying a kite.

Daddy told me there's three things I should take from my kite flying experience.

#1. Hopefully that nice man doesn't take daddy's advice.
#2. The next time someone tells you to "go fly a kite".  Do it and then send them a picture.  It's a lot of fun!
#3. Grauntma Leslie is a Grauntma because she's old enough to be my grandma, but she looks good enough to be my aunt...daddy also told me to say that Grandpa Scooter is an overachiever...whatever that means.

I'm Pooped!

Items I Can Scratch Off My Bucket List:
1. Move my legs for mommy & daddy
2. Rock a bikini!
3. Take a big girl bath
4. Get asked out for a Valentine's date
5. Tasted solid foods
6. Fly a kite
7. Sit on daddy's shoulder
8. Pass out on the couch watching infomercials.


Up Next:
Yesterday, some of my new friends helped me spread my message about SMA and I will post links & videos later today or tomorrow:

104 KRBE - Roula & Ryan Show

FOX 26 News Houston
CBS 11 News Houston
Tonight, some of my uncle's are throwing me a Texas backwoods birthday party...whatever that means.







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.

36 comments:

  1. I just came across this sweet blog. Your baby girl is adorable and my heart hurts for your family. I love reading about cute little Avery and how strong and sweet she is! You have an adorable family. I wanted to pass this video on, it is something that gives me hope and comfort during hard times, and I know that it is true. Best of luck with everything!

    http://www.lds.org/pages/mormon-messages?lang=eng#good-things-to-come

    and this as well.
    http://www.lds.org/pages/mormon-messages?lang=eng#families-can-be-together-forever

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  2. Sweet girl you inspire me each day. You have the world a little more beautiful by being in it. And... you look fabulous in a bikini!

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  3. Avery, you're an inspiration and a beauty! I'd like to help your mommy and daddy, if I can. First, my family would love to send you a hug but I don't know where to send it! Is there a good email address to send avery hugs to?
    Second, I make a living as a web analyst, which means I use special software to track what people do on websites, similar to the blogspot stats but a lot more powerful. I live in Houston and would love to give your mommy and daddy some free advice/expertise to get set up using one of the best free solutions out there (google analytics) to help them see how many people they are reaching and what ways of getting people to hear your story work best. If they're interested, have them email me at jennikunz at gmail.

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  4. Lots of love to you little Avery and lots of love to your strong and inspiring parents. Thank you for sharing your story.

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  5. Your story is absolutely amazing and it's so nice that despite the bad things happening you're living your life to its fullest. You should make a pin that can be posted onto other people's blogs to spread the word even more. I don't have many visitors to my blog but I plan on writing a post about little Avery when I get the chance, I already follow her on facebook and twitter.
    Much love to you Avery and to your whole family! Your parents are amazing and strong people and you are a lucky little girl to have them and all their support

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  6. Princess Avery you have touched my heart in a way I cant explain.. I am overwhelmed with emotions.. You are a beautiful princess and I smile seeing you accomplish these things on your bucket list! To mommy and daddy, I admire your strength and dedication to continuing to LIVE everyday to the fullest with Avery. I send many hugs and prayers and a lot of love to your family. If there is any way my daughter and I can help you with your bucket list - let us know! She is 17 months old and loves meeting new people! Xoxo -Jasmyne and Madelyne

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  7. Your story is touching and beautiful. I look forward to following Avery's adventures as she embraces life and all it has to offer :)

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  8. http://www.sethswalk.org/

    Our nephew, Seth, has SMA Type II. I hope that you can join us at the walk and meet other families of SMA for support.

    http://fsma.org/

    Veronica Gilley

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  9. I am the nana of a 26 month old little boy named Charleston. He has SMA Type 1 also. He is THRIVING and doing well. SMA does NOT have to be a death sentence. FSMA is NOT the only place to get information. Please look into Sophia's Cure, and if you'd like to read my blog about my journey with Charleston, you can find it at www.hopeforcharleston.blogspot.com.

    We have been in your shoes, believing that he can't survive. But he IS surviving, and he's a HAPPY two year old.

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  10. Hi Avery & parents :) My name is Gina, I have a daughter named Avery who is also 5 months, she was born Nomember 11th 2011... I would love for our little Averys' to meet and get pictures together. I'm praying for you guys, yall have so much support behind you. I can't imagine what yall are going through. I am deeply touched by your family and your daughters story. She is beautiful, I just hope your little Avery gets to do everything on her list! She is adorable and is very loved, she is a lucky little girl! Here is my email gyurchak721@gmail.com I hope I get to meet you guys. I would love for Avery to have a friend her age! Anything you need, let me know!

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  11. Mike, Do you think you could add a "button" on the sidebar of your blog that other people could use on their blogs to direct people easily to Avery's story?

    We think about y'all daily.

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  12. Hi Avery~ Precious and beautiful you are~
    And traveled you are, for tonight I saw you and your lovely parent's on my TV, all the way from BC, Canada, where, I have tweeted your story for more to see.

    Sweet you are little one, as is my grand-baby who's name is also Avarie.I'll think of you dear one with every precious cuddle I give to my own little Avarie.And think of you with every little giggle, smile, and sneeze.
    Blessed be~

    Dee-xo~

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  13. Tonight, I would just like to weep like a baby for you. I am so scared to get close to you but I find myself checking back on your blog to see what great adventures you have concorqued. Today I started coming down with flu or stomach flu symptoms, not really sure what it is but I feel really sick and bummed. I'm really afraid to pass it to my 2 and 4 year old boys so I'm sleeping on the couch downstairs. I would HATE for them to feel like this. But as I lay here and feel sorry for myself I come to your blog and see you in tv and realize how much worse things are for you and your family. You have the strongest parents I have ever met and the only stronger parent that I can think of is our God in heaven. I'm really happy that I have recently started seeing my facebook friends post about you and I will do my best to spread the word to people by mouth as well. But right now I will cry myself to sleep and pray that your days just keep getting better!

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  14. I just read about this blog on Babycenter last night and as I began to read more, I cried like a baby. Your Avery is beautiful! I have a 3 month old daughter and she is the light of my life... just as Avery is yours. I know I have never met you, but please know you are in my thoughts and prayers. You are amazing parents and I admire your strength and resilience. I cannot imagine having to go through what you are going through everyday. I pray that Avery's life is filled with more love and fun then she can handle and that you cherish each and every moment.
    Little Avery- You are gorgeous and absolutely amazing! Your mommy and daddy are so lucky to have you :) I look forward to reading more about your bucket list and seeing more of your smiles!

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  15. Your story really hit home, I have a 4month old son and couldn't even think of something like this happening to us and being as strong as your parents. God truly blessed you with your Mommy&Daddy and I'm amazed at their strength. You have been on my mind ever since I heard your story yesterday and cried my eyes out as I prayed for you last night. I don't know just how big a tea party you were thinking but our church here in Sealy is hosting a Mother/Daughter Teddy Bear Tea Party April 28 and would love to have you and your mommy as guest. Contact me if interested Jennifer_s84@Yahoo.com.

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  16. I love what you are doing through Avery's blog. What an amazing way to spread the word about SMA. I work in an NICU and my heart too has been touched by babies with SMA. Thanks for sharing and my heart is with you in Avery's journey of life :)
    Christy

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  17. Hi there ! I saw your story on facebook. One of my fried has lost her child because of SMA Type 1. I know how hard it is to know that time with her is lmimited. A French Writer has told "when you can not add day to life, just add life to days ..."
    I'm from Madagascar and can not do a lot, but be sure that you will be in my prayers like all those little babies that suffer of this horrible disease. lots of love to you and wonderfull Avery. Wish her great moments !

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  18. This story has touched my heart! I also have a child who has SMA. Hers is type 2. We met our first SMA friend last month her name is Hailee she was diagnosed with type 1. I pray for a cure soon for our children. Thank you for sharing your story.

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  19. I have just found your blog and I can't stop crying or thinking about your beautiful little girl. I have a 9 month old daughter, so your story has really had an impact on me. I had briefly heard of SMA before, but never the different degrees of severity. After hearing your story I did my own research and now know far more than I ever would have about SMA. Please know that your efforts are succeeding!

    The strength that you and your family possess is astounding. I want so much to be able to provide a cure for Avery, and in that I feel helpless. I can only imagine how you feel. What you are doing for your daughter is nothing short than amazing. I hope you find comfort in the fact that your daughter doesn't feel the sadness or anger that you feel. Her life, although short, will be one of happiness, discovery, and wonder all thanks to you. That is what she'll know, and so few people leave this world with a life unmarred by sorrow. She will, and that is the gift you're giving her.

    Know that your daughter is loved by so many people, even those she's never met! I tell my daughter all the time that everyone loves her, how could they not? Avery is truly loved around the world, and as small as she is, she's already made a larger impact than most do their entire lives.

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  20. I am not much of a blogger or follower of much but i came across this somehow and now i am so excited to read about your adventures and life!! i have a 5 month old as well born Oct 24 named Shae and i cant imagine what you are going through!!! I am going to put you all on our church prayer list!!! What a beautiful and amazing little girl!!!!!!

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  21. Avery...you are a strong a very courageous beautiful little girl..you don't know me from that person walking down the street..and I'm sure your mom and dad have already spoke to you about talking to strangers..so I will keep this short..God's plans for you are nowhere near done yet..He has your life all planned out...He has blessed you and your parents with each other..keep up the good work on being an advocate for SMA..my heart goes out to you baby girl..I look forward to reading more of your adventures as you work on your bucket list.

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  22. Hi, Avery! Can I suggest something for your bucket list? How about a manicure (with frosting, not real nail polish, of course!)? That way you can enjoy the pretty nails before licking them off! I've never had my nails done, but if you're willing to do it, then I will submit to it too, hehe! Come to think of it, I'd rather have my nails done in frosting actually ...

    By the way, I shared your story on my newly-created Facebook. I don't have many friends yet, but maybe that will change in the next few months. I have complete faith that you will still be sharing your adventures when my friends list hits double digits!

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  23. What a beautiful girl. You guys are SO brave. I don't know what else to say, but thank you for sharing. Thanks for sharing Avery and life and love and smiles and information. Mostly the love. Thank you. xoxo-Diana

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  24. I'm glad you had a wonderful time in the bathtub! I've been trying to get the word out about your blog through my blog, so hopefully some of my visitors have been coming to visit you!

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  25. Avery I hope you know how much your parents love you. Even without knowing you, my heart hurts for you, I can not imagine how your parents feel. You are so lucky to have them in your life, if even for such a short time.

    You story is so inspirational (I bet you hear that a lot.) You go and live your life, for you, for your parents, and for all those people that do not live their lives to the fullest.

    And to you Avery's parents, thank you for doing all you are doing. Your baby girl is so blessed to have you, and from her pictures I can tell she knows it. From one parent to another, thank you for loving her so much.

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  26. It is beautiful what your doing with the blog and bucket list. We lost our beautiful grandsome Jordan more than eight years ago to SMA and he is still missed everyday, He has three perfect beautiful brothers and that has helped but he is still missed. One one the most important times during Jordan's short time with us was when he got to be a normal baby, he was my son and his wifes first child and they felt like they got cheated so a physician at the hospital found a way to make his feeding more easy and less noticible and he has some time where he was just a baby it was beautiful, he did not have a lot of firsts, my wish was that he could have a lollypop, that never happened but he did smile alot! He loved the Wiggles. Keep doing what you are doing with your daughter enjoy her she is beautiful. Always celebrate her.

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  27. Your story is wonderful...I was born with SMA 41 years ago as was my sister 36 years ago...my parents were told that we would not live past the age of 2. Do not always listen to them, its not up to the doctors. I have 3 children and a granddaughter now. You and your parents just keep hanging in there...it is a struggle but worth every bit.

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  28. Avery you are so beautiful! I have two beautiful little girls too, they are 2 and 4. Sometimes as a mommy I get so tired, worn out and frustrated. Thank you for reminding me how lucky I am and how everyday should be cherished and that children are the most amazing blessings. You looked like you were having fun in the bath!! You and your family will be in my prayers.

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  29. Avery,
    You are a beautiful and amazing little girl and are blessed with incredibly strong parents. As I sat here reading your story and crying my heart out for you and your family, my seven year-old daughter Aubrie came over and asked what was wrong. I showed her your blog and your list of wishes and explained your story. She would like to share some of her temporary tattoos with you (if your mommy and daddy say it is ok to rock one) so that you can cross getting a tattoo off of your list. Aubrie thinks you're pretty special too and she thinks it's pretty cool that both of you have names that mean "rules with elf wisdom."
    Take care little elf, keep smiling that precious little smile for your mommy and daddy. We will keep you in our thoughts and share your story.
    Missie and Aubrie

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  30. hi, I am on a yahoo group called http://health.groups.yahoo.com/group/StemCellDR they are a group of American naturopaths and MDs doing stem cell transplants in a hospital facility in the Dominican Republic. What makes them unique is that they offer stem cells from the donor's own body (adipose which is fat tissue, or bone marrow, or both). I have been on that list for a while, and while not every single person gets gains, MOST DO, and some are fabulously life changing (Autism, severe, Parkinson's, more conditions I just don't know at the moment). I am not sure if this is appropriate for your daughter, but might be something to consider. They talk at the Yahoo group openly and you can just ask the question there. I think the cost is very reasonable, around 5,000 usd or so and does not employ umbilical or embryonic tissue whatsoever. Best of healing journey to you all.

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  31. have you thought about sending this to Ellen to help to bring more awareness to Avery and SMA?

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  32. Avery, you are an inspiration even to those who think they are strong. Stay strong to inspire more.

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  33. Please take a look at the research trials for Type 1 SMA @ Children's Hospital Boston:

    http://www.childrenshospital.org/az/Site1061/mainpageS1061P5.html

    Best wishes for your beautiful family

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  34. Dear Avery's parents, our deepest condolences. Avery was a brave girl. I'm sure she had brought so much joy in many people's life, and will continue to live in their hearts. I love her blog, and have shared it, hoping to bring her story and SMA to those I know so they can help tell her story too.

    Best regards,
    Bingrong

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  35. Hi, i´m from Mexico, untiled now i knew about your beautiful story, i think that you are an example for all the families that in some moment tought that a disease will be the end of their lifes, but you taught to all the world, that we have to enjoy each minute of the life
    I´m complete sure that Avery is so glad for had that family
    Now, she is in heaven, she´s your angel family Canahuati
    :) my best wishes

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