SMA BLOG PARTY: This is SMASeptember 15, 2010 by Victoria Strong
Today is the first ever "SMA BLOG PARTY!" Thanks for joining us by reading about the #1 genetic killer of young children, posting about this cruel disease, and sharing the links with others. The idea of the "SMA BLOG PARTY" is simple -- bloggers come together to 1) Talk about SMA, 2) Put a face to this awful disease, and 3) Help WIN $20,000 for SMA research! Be sure to link YOUR "SMA BLOG PARTY!" post to this post by adding it in the comment section below -- so we can all find it, read it, and help end SMA one blog post at a time!
So here is my "SMA BLOG PARTY" post:
Before Gwendolyn was born, I had never heard of SMA -- Spinal Muscular Atrophy. I had a perfect pregnancy. No alarming tests or ultrasounds. And she always loved to stick her little foot in my belly button (and hard). Our sweet baby was born kicking and screaming and passed all current newborn screening. She fed well, porked up like a champ, and we took her home proudly.
SMA entered our world when Gwendolyn was three months old...we just didn't know it yet. We spent months, countless doctors visits and 4 weeks in the hospital, trying to figure out what was going on with her and we were so, so hopeful that it was something treatable. It wasn't.
This is the day Gwendolyn was diagnosed with SMA. She was almost six months old. I got the call from our neurologist about 10 minutes after filming this video. I didn't film any more that day.
And this is the email we wrote to our friends and family. We couldn't pick up the phone except to immediate family and, well, those conversations were not pretty.
A lot has changed since then. We have learned how to live with SMA. We have learned so much more about caring for Gwendolyn and where research stands. And we have learned how to give Gwendolyn a rich, full life despite the impacts of this cruel disease. But... SMA IS our life now. No matter how much we carry on normally, SMA impacts every single aspect of every single thing in our daily life -- and, especially, in Gwendolyn's. There is no escaping it for even a moment. And, although I am grateful for every second I have with Gwendolyn and I adore her spunky personality, I will never stop wishing she did not have SMA...because I want more. More playing. More smiles. More "I love yous." More time.
What is SMA?
- SMA kills more young children than any other inherited disease, is the most common cause of genetic infant mortality, is the #1 genetic killer of young children.
- SMA is degenerative, causing the weakness and wasting of voluntary muscles -- eventually impacting crawling, walking, standing, sitting up, coughing, breathing, swallowing, speaking...anything requiring muscle strength.
- SMA is estimated to occur in 1 out of every 6,000 live births. Incidence rates are comparable to the more well known ALS/Lou Gehrig's disease and Cystic Fibrosis.
- 1 in every 40 people unknowingly carries the SMA causing gene or nearly 8 Million potential parents in the U.S. alone -- making it "common." Both people must be carriers for the disease to be passed on -- making it "rare." There are simple blood or saliva tests available to learn if you are a carrier before you get pregnant. The American College of Medical Genetics recommends ALL couples be tested for SMA.
- SMA is terminal. There is currently no treatment or cure... BUT there is much research work being done around the world and it holds enormous potential. In fact, the National Institutes of Health selected SMA as the disease closest to treatment.
- SMA research is drastically underfunded --> YOU can help!
- You can vote once EVERY DAY from now until September 29th at 5 PM EDT
- Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click Vote Now!
- Thats it! Its really that simple
- Dont forget to add your name to the DailyVoteReminder.com list so you dont miss a $20K vote.
- Anddont stop there SHARE!