Sometimes when Mike and I have some time we'll scan some of the sites on SMA. We don't get a lot of time so truthfully we haven't done much research. Last night however, we stumbled onto one sight entitled SMA Angels. All that we saw was a list of names. The names were all babies that had lost their lives to SMA. It was staggering. I keep reading how rare SMA is affecting 1 in 6000 births and yet when you see a sight like that it is a sobering reminder that it doesn't matter how rare it is when it is affecting you.
When I saw the long list of names there was a tiny part of me that said "Well, at least we're not alone." But the bigger part of my brain was screaming "Why aren't we doing more? This is complete madness!" We also came across another sight where you can sign a petition to cure SMA. It's an American site and there are currently over 55 000 names on the list. We, of course signed ours. Anybody from any part of the world can sign that petition. Sorry, I don't have it in front of me but I will for the next entry. (Edit: here it is. -Mike) You see, it doesn't really matter where they find the cure. I'll learn to sign my name in Chinese if it means stepping closer that goal.
Ten years, I was told in hospital. Ten years before we'll see anything substantial with human beings! Ten years is far too long to save our Georgia and sadly, far too long to save the hundreds of babies that will be born in the next nine. Currently, there are no treatments, no diets or exercises and no surgeries. In essence, no hope for the babies born between now and 2018. Some of the babies are living a little bit longer because of the use of the Vpap machines. Georgia would have left us just over a month ago without one. Weeks and months however doesn't even come close to being enough when we are talking about infants.
So, if your heart breaks as you read our blog or as you look at our gorgeous baby girl I throw out another challenge to all of you. Find out ways to share info about SMA, even if that means just sharing our story. Maybe some of you will sign that petition (linked above). Whatever little step you choose to take matters!
Georgia is upstairs napping at the moment. We had an uneventful night and she woke up happy. Thank goodness for one more morning!
8 Years an Angel
2 weeks ago