Monday, April 23, 2012

My Friends & I Are "A Cost Related Decision"

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.

"We are all born pure & innocent.  We can let the world change us, or we can change the world."
-My Daddy-

Soooooo before I show you my new friends from all around the world, here's a few facts I just learned about SMA.  Or as daddy says, "Aviator, you better get your soap box out of the closet"...whatever that means.
While the SMA carrier gene is more prevalent in certain races it does not discriminate based on race, sex, or religion.  Also, as of this moment, approximately 1 in 6,000 of my friends are born with SMA.  Way back before I was born, in the year 2005, there were 130 million of my friends born around the world.  So if my math is correct, approximately 22,000 of my friends were born with SMA in the year 2005.  And who knows how many more of my friends in the past, present, and future have been unknowingly born as carriers of the SMA gene.

Caucasian - 1:35; Asian 1:53; African American 1:66; Hispanic 1:117

Oh and if you have a relative who has SMA or is known to be a carrier of SMA, then your chance of being a carrier is even greater.

And it makes me wonder just how much higher these numbers would be if everyone was given an SMA carrier gene screening.  I mean, when did you last receive your SMA carrier gene screen?  What about your spouse?  Did anyone test any of my friends when they were born?  I know they ran a buuuuuuuuunch of Newborn Screening Tests on me when I was born.  How come SMA wasn't one of them?  And why did mommy & daddy have to pay $2500 just to find out I have SMA?

According to the Chief of Genetics Service at Texas Children's Hospital the answer to most of these questions is...

"Currently it's not being offered as a standard recommended test.  It is a cost related decision."

or as daddy put it in his opinion...


whatever that means.

In case you're wondering, had mommy and daddy known about SMA they could have taken a simple blood test to tell them whether or not they're carriers of the SMA gene.  I had daddy make a phone call to Athena Diagnostics, a genetics testing lab, and they said depending on which insurance company you have and the state you live in, ALL or a portion of the SMA carrier test could be covered by your insurance provider.  But since the SMA gene test "is not being offered as a standard recommended test" for "cost related" purposes, YOU HAVE TO KNOW ABOUT IT TO ASK FOR IT!

Here are some of my friends without SMA who are sending me smiles from all around the world.  They are your future so please remember to help them live, laugh, and love, but more importantly, cherish each and every moment.  
Hey, I have a puppy too!

Silly rabbit!


I like cookies too!
I'm no longer afraid of monsters.

I like when my daddy holds me too!





The monitor adds ten lbs...you should see me in person ;-)

Hey handsome!  I like shopping too!
Purple is one of my favorite colors too!


I hope to be an older sister just like you.

Hi to you too!



Giiiiiiiirl, love the dress!  Where did you get it?


My future sister-in-laws with my future hubby.
My mommy makes me smile too.

Fight the power!  I will.
Special thank you to all of the other mommy's & daddy's who posted pictures of my friends!  And just know I tried posting ALL of them on here, but it kept going reeeeeeeeeeeal slow & giving me some error message, so here's the link to the rest of my new friends.

Items I Can Scratch Off My Bucket List:
1. Make friends from all over the world.
2. Stand on a soap box...whatever that means
3. Bring complete strangers together in support of my cause
4. Further educate people about Spinal Muscular Atrophy

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.

29 comments:

  1. Hi Avery,
    My mommy is a drill team director in the Houston area. She was also a Strutter Officer at Southwest. Her team has their spring show may 4-5 and would love to help you cross dance recital off your bucket list. I love watching her girls dance and I know you would love to as well. Does your mommy or daddy have a email adress my mommy can contact them at?

    My Gigi and GP are taking me to see the big girls dance and I'd love to see you dance with them

    She told me that Bobcats and future Strutters have to stick together!

    Love,
    Caroline G.

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  2. Hello I wrote a comment a few days ago and I'm sure you are busy and may not get to read all or respond to all I would really love to get in contact with miss avery (well my kiddos really.) If you could email me at kasandragarza09@gmail.com with a better way to get in contact I would appreciate it. Thank you so much and god bless!

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  3. Dear Avery,

    I tried to post a picture on the babycenter page of your 1000 smiles from around the world, but I couldn't get it figured out. I posted it on your facebook page instead so I hope you see it! My sons were wearing tuxedo shirts and wanted to know if they could take you to prom:) That is if you can ever make it to Green Bay, Wisconsin:) Thinking about you always! Hugs and Kisses and Smiles to you!

    The Mills Family

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  4. Hi Avery,

    I posted a smile for you from my daugher, Faye, on babycenter! Her daddy and I send you and your mommy and daddy many smiles every day. Thank you for sharing your story with all of us and helping educate the world about SMA. I work in Early Intervention and it's great to know what an impact you are having!!
    Stay smiling kiddo :)

    Ashley, John and Faye Rose

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  5. Hi Avery!

    Thank you so much for telling us more about SMA. Neither my husband nor I have been tested for SMA but before we have another child that is on my priority list! No amount of money is too much when it comes to providing children the best possible start to life, and hopefully we can all work together to correct this issue. Education is key!

    You're such a precious little girl who's adding so much joy and love to this world just by being you. Keep it up!

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  6. You make me smile everyday. I can't wait to read about your life and the ways you inspire people to do great things. You inspire me and my girls, and your mommy and daddy will never know how much you have changed my life and outlook on life. Keep educating and fighting!
    Susan Rogers

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  7. My dear friend has a daughter with SMA. She needs assistance walking but uses her arms and can stand on her own while holding on. She goes to see the only specialist in SMA which is in UTAH. She takes a medication that is used for treating epilepsy and it has been very effective at stopping the progression of this disease. She just celebrated her 5th birthday. They do fund raisers to help with the cost of traveling to Utah once a year. I will get the doctor information and post it.

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  8. Hi Avery,

    You are such a special little girl!
    I want you to know I am just an Uncle,I do not have my own little guys...but I do think kids are pretty neat!

    I also want you to know that the world is a much brighter place with you in it!

    Your beautiful smiles and adorable face bring joy to anyone who meets you!

    Uncle Bri

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  9. *sigh* the health insurance jumble. stinks. did you ever get your 1000 smiles?

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  10. Avery, You are so beautiful. Thank you for sharing your information and walk through life for others to learn from. Prayers from GA.
    Casey

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  11. I can't believe their excuse for the test to not be required or even recommended is that it's "cost related". With so many other tests most people don't even want nor care to get is free. Enough being upset.
    I love you little Avery you are a very bright beautiful inspiring baby girl. God made you and blessed you with such wonderful parents with the knowledge to change the world!!

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  12. Beautiful angel, you are always with me
    When I am sad, when I am happy
    I'm never alone, your wings embrace me
    You will always be there to protect me

    Sweet angel, Avery, my prayers are with you everyday...so many people, most of whom you will never meet, care and love you deeply. I think of you often and continue to share your story with everyone I know.

    Love you, beautiful girl!!

    The Hess Family
    Brian, Melissa, and Aria

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  13. Hi Precious Avery!

    Hope you are doing good. Shared your story yesterday with some of the T-Ball moms! Mission spread awareness is going strong!

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  14. Hey Avery,
    I was reading your blog and saw the part about asking our doctors to test for SMA. Can you tell me the purpose of the SMA testing? Are there benefits to knowing about SMA before our baby is born?

    God Bless!

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  15. Sweet sweet girl. You have opened my eyes and have reminded me of the small things. I will be praying for you every day. Keep smiling :)
    Lareigh

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  16. Sweet Little Avery---We all are praying for you. I have shared your blog with all my friends and family and they all are praying for you. Keep smiling sweetie.....we all love you! I admire your parents and you have become an inspiration to me and everyone I have shared your story. Be strong little one....God Bless!

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  17. Dear Avery-
    You are a beautiful baby girl with amazing parents! I will do whatever I can to help you with your bucket list and to share your story! You are a beautiful inspiration! I am praying for you. I will be sending Ellen as many emails and tweets as possible.
    Southwest Texas an Strutter Alumni-
    TaShane O'Haver

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  18. My husband was tested with the Ashkenazi panel, and I was tested for diseases common in people of Mediterranean descent before our son was born. I don't think we were tested for SMA, and before we have any more children we will certainly ask for screening for SMA thanks to your blog. Thank you for sharing your story with the world.

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  19. Hi...I just read your article on Yahoo. My oldest son Ethan has SMA Type 1. He was diagnosed at 3 1/2 months of age. We live in Fairfield, CT. Ethan will be 7 years old on June 13th. He is AMAZING. He may be vent dependent at this stage, but he is a legend in our town. EVERYONE knows Ethan. He attends school and is in the 1st grade. He goes with his nurse. Stays all day long and is fully integrated into the class. He absolutely loves school and loves his friends and his life! He plays baseball in the town little league. When it is Ethan's turn at bat, someone gets picked to hit for him and then another kid pushes him around the bases. They all love it! He is in Cub Scouts and even goes hiking...if Ethan wants to do it, we make it happen. He just competed in the school's variety show! Did a dance from his powerchair to the Party Rock Anthem. :) I took a break from Facebook about 2 months ago because to be honest, with Ethan's schedule and my twin boys, life got crazy! lol...I simply wanted to tell you, that I've been there...in the months after diagnosis, it is so hard. BUT, I can honestly say...I wake up every day now and think about what events, playdates, activities, etc. are on the calender for Ethan...SMA does not rule our life anymore. It IS possible to have a future. And a promising one! I've already got him signed up for summer camp! If you put Ethan Takacs into youtube there are a bunch of videos there where you can see him. And I'd love to offer any help I can to your family as well! My email address is kellyanntakacs@yahoo.com.
    Kelly

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  20. Check out www.sjcdp.org field of dreams. We would love to have you tomorrow! Email me if you would like to come. Miss Avery could play in her first baseball game :) rickeyfam5@aol.com We have so much fun! Maybe more than the kids LOL!!

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  21. Hello Avery. You are such an inspiration to everyone that reads your blog. Tell your mommy and daddy to keep up their good work. God bless you all.

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  22. I know how it feels to lose function of your arms and legs. I have Duchenne Muscular Dystrophy, a muscle-deteriorating disease that slowly weakens my muscles over time. But I have not, and will not, let it stop me, just like Avery! :) I even have a blog called The Optimist's Guide to LIfe at http://www.anthonysabilities.com/blog/ teaching others how to be live life to the fullest and overcome life's obstacles, with Optimism of course! Check it out when you get a chance! :) I have nowhere near Avery's number of fans though, I only have 19,000 unique visitors, so would like to say CONGRATULATIONS and Thank You for spreading awareness of SMA and all other Muscular Dystrophy disorders!!!!

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  23. Little Avery is a living doll......But, I must ask. Why the testing? Can it be cured before a baby is born? Or are you saying if you had know little Avery had this early on you would have aborted her, or if you had known you were a carrier you never would have had children??? I am just a little confused......I know she was designed and created by God and has a unique purpose. And that she is perfect in His sight....Blessings to you as you love and care for this precious child....

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  24. Avery, I am so sorry to hear of your passing. Just yesterday I read about you for the first time. I spent hours reading your blog and falling in love with you like the whole world has. You are a beautiful little girl and you touched the lives of so many in your short life. May God bless you and your light shine down to provide hope for others struggling with many ailments. You are missed and loved.

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  25. Avery, I am so sorry to hear of your passing. Just yesterday I read about you for the first time. I spent hours reading your blog and falling in love with you like the whole world has. You are a beautiful little girl and you touched the lives of so many in your short life. You are missed and loved. Your light will live on forever.

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  26. Avery,

    My friend at work told me all about you, and today she told me the sad news of your passing, I am so sorry I didn't get a chance to write you before now.

    I haven't been able to stop reading your stories, they have made me laugh and cry, sometimes laugh and cry at the same time...What a site:)

    Anyway, Avery I wanted to tell you that, what you have done here is so very special, you have touched so many hearts during your time here and that's pretty amazing.

    Your Mommy and Daddy should be so very proud of themselves for sharing your life with us. They could have kept you to themselves, but instead they shared you, what a difference sharing makes, you are proof of that!

    You will be missed sweetheart. xoxox

    Love from Canada:)

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  27. Rest in paradise sweet angel. I sincerly hope your daddys wonderful blog gets the word out. God had a purpose for you and I pray for strength for your mommy and daddy.

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  28. A five month old girl has touched more lives than many of us can ever hope to. I am devestated to hear of your loss. What a lucky little girl, though, to be blessed with such wonderful parents. As I await the birth of my son, I can hope to be but a fraction of the type of parents you are.
    The only genetic testing that was offered to my husband and I was cystic fibrosis. While still a horrible disease, there is a much longer life expectancy and people with it go on to live full and happy lives. It is amazing that testing for something as debilitating as SMA isn't offered as well.
    You will be in my thoughts and prayers. Whenever I look at my son for the first time (and many times thereafter) I will think about Avery and her gift to the world.

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