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.

Soooooo tired!

Best G-Pa ever!

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!

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!