Why I Walk
I have chosen to do this walk and to raise money for Cure SMA because I lost my baby boy to SMA Type 1.
Let me introduce Aiden. Aiden Ray was born Dec 31, 2016, 5 weeks early. Within the first couple of month Aiden had developed one respiratory infection after another. It seemed like we were always in and out of the doctor’s office. At Aiden’s 4-month checkup, I expressed my concerns about him not moving or wanting to hold his head up. They ran some test and a couple of days later we found ourselves heading to Louisville to see a pediatric neuro. That day was the first time I have ever heard about SMA. It wasn’t until 2 months later on, July 11, 2017 we received Aiden’s diagnoses. Aiden was diagnosed with SMA Type 1, something no parent wants to hear. We knew at that moment we would be living day by day. I can not even tell you what was said at that meeting, as soon as it was confirmed, I went numb.
That night I logged on to Cure SMA, within a day I had received more information about the disease then I ever wanted to know. When we got out of the hospital, there was a generous care package waiting for us. They filled this care package with anything and everything an infant with SMA would need. The crazy part was it was FREE. When Aiden got to a point where he could no longer use a typical car seat, they sent us a special one where he could lay down. This car seat allowed him to breathe and not have any restrictions. Again, it was sent to us without a charge.
Aiden lost his battle to SMA on Oct. 6, 2017 after spending 5 weeks in the hospital. This disease did not only rob Aiden of basic function such as breathing, mobility, and swallowing but it also robbed me of my baby boy. It kills me not to have my son with me now, but in reality, what hurt me the most was watching my little man suffer. After Aiden passed way, Cure SMA sent us a card, a gift, and made sure to know we always have a support system. To me Cure SMA was not just an organization but a second family.
I do not normally ask for donations for anything but this is most defiantly a cause I believe in. Our family is living proof that Cure SMA is doing amazing things. So please whether its $1.00 or $100.00 if you have the ability to donate, choose Cure SMA. Without this cause my family would have been lost, and I think that’s safe to say about most families that have someone diagnosed with SMA.
With much love,