I think people who are not involved every day tend to forget how tragic SMA is. People see a "disabled" child, smiling ands happy but don't see the real disability, respiratory........
Any of these kids could pass at any given time, no matter what. They can be in the "best of health" for their condition, it doesn't matter, SMA doesn't care if they are watching a movie, taking a nap, taking a bath,moving them from one room to another, taking them to their own birthday party, going to see nana and grampa, their aunts, uncles, friends, going to school...get it. These parents smile, laugh and live but if they are like me, they are scared shitless everytime you roll your child over........i live in constant anxiety, never knowing when I'm going to be called to save my daughters life......
Everytime you do a simple activity, moving her from her bedroom to the living room, I sigh in relief that she is still alive. I live my life in fear, at night, constantly listening to monitors, waiting for alarms, listening to her breathing, making sure I hear her feeding pump running..........afraid to say goodbye when I leave for work cause it might be my last..... Peyton's Father
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.