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.

SMA Carrier Risk in People With NO Family History of SMA:

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."

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.

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!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

If you feel 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)

Cure SMA (www.curesma.org)

Sophia's Cure (www.sophiascure.org)

Thank you!