In August the Unite 4 Peyton board was honored to attend a fundraiser hosted by Sophia's Cure. I had the honor to meet Dr. Kaspar- who is on the cutting edge of research when it comes to finding the cure for SMA. I am not a doctor, and honestly most times don't understand a lot of the information that comes my way. Every time that I read something though- I always read that the cure is coming, we are so close!
That is why we must continue to fight to find the cure....we would hate to stop now- when it may be right around the corner.
Unite 4 Peyton has been busy funding grants for families that need equipment for thier child. I am simply amazed at what insurance will NOT cover for SMA families. The thought process makes absolutely no sense to me. They will cover one part of this- but not the other- huh? However One doesn't work without the other..... It seems so unfair that families with sick children would have to spend all this time fighting the insurance companies. Trying to justify that their child needs a chair to be able to sit safely, and properly supported, or a cough assist machine in order for their child to survive.
We just wrapped up another Thanksgiving- and we were blessed to be able to spend it with Peyton and Kylie! Peyton was so animated! It was great to see her laughing, smiling and chatting away! She was watching football with grandpa (which she said she wanted to watch!) Then her and I played blocks for awhile. When I told her I had to leave she said NO!! I love her communication- and the fact that her and I can still hold a small conversation! She is a fighter!!!! I know that one day we might lose her ability to talk, and say NO- but today I am very thankful for it!
I am blessed to be the Aunt of Peyton. She has changed my life in so many ways. I will fight, to save her life and the lives of so many others with SMA.