When she had her first cold at two weeks I was troubled but everyone reminded me that it was fall and she was constantly being exposed to little kids and all kinds of germs. I let it go. I kept letting all of the colds go until I noticed that instead of getting stronger she appeared to actually be getting weaker.
At four months I placed her in the exersaucer and she flopped over like a rag doll, literally. I wanted to throw up but instead made an appointment with the doctor. It would take weeks to get that appointment and a hospitalization before we received the most devastating news parents can ever receive. Spinal Muscular Atrophy. What the heck is that?
Well, it's awful, devastating and breathtaking. It stole Georgia's ability to breath at just six months of age. It left us all reeling and wondering how we would go on. Luckily for us, our friends and family have lifted us up. We have learned to live on faith and of course the support of those family and friends.
Before I lost my baby girl, babies didn't die in 'my world'. My maternal grandmother had 11 children and they are all still alive well into adulthood. My paternal grandmother had six children all of whom lived well into adulthood. Mike's maternal grandmother can trace their family history back 100 years and there are no records of babies or even children dying. I lived in a blissfully ignorant world.
My world was rocked on April 1st 2009 and then shattered on April 21st of that same year. I continue placing the pieces together thanks in large part to a new and expansive family. My SMA family. They are strong. They are passionate. They are hard core. They are courageous. They inspire me each and every day. They need a cure!!
There are many steps needed in finding a cure. One of the first ones is making sure that people know that Spinal Muscular Atrophy not only exists, it is creating angels every day. If you can't remember how to explain it to people you can always say that it's like 'Baby ALS or Lou Gehrig's disease.' That usually gets people's attention.
When Mike and I decided to get pregnant with a fourth child she had a 25% chance of having SMA. In fact, all of our children had that same chance. Because we are both carriers every pregnancy is risky. Somehow we ended up with 3 healthy girls but there are families out there that lose 2 and 3 children to this awful disease. Try to imagine it for even 10 seconds...
We are grateful for all four of our children but miss our 'Joja Wiwee' each and every day. We continue to ask for your help in raising awareness and funds for Spinal Muscular Atrophy not only to honor our daughter but honor and fight for so many other children - because, '
Love to you all,