I would like to say hello to everyone out there in the PPMD community. Let me introduce myself...
My name is Hyacinth Respass Fiorenzo, of Long Island NY (formerly North Carolina). I am the proud mother of two gorgeous children, Hunter Montgomery (9) and Joseph Nathanial (4) and the wife of a most loving and generous husband, Joe.
Hunter was diagnosed with Duchenne by way of spontaneous mutation, a deletion of exons 13-24. Who would have ever thought that such a small window of our DNA could make such a huge impact on the lives of so many people? Especially Hunter.
But he's a trooper. Hunter has taken every change in stride and approached life with a smile on his face and warmth in his heart. Many times it is his persistent optimism that forces everyone else to accept the situation at hand. Our favorite saying is "It is what it is." God knows we can't change what life has handed us for right now but we can damn sure make the best of it.
And we do.
Hunter enjoys swimming, fishing, camping, video games, cars, carpentry and electronics, building, reading and telling jokes. He basically feels that it is his responsibility to keep everyone's spirits up and he takes his job very seriously.
At 9, he recently lost his ability to walk. In true Hunter fashion, however, he used his newfound wheelchair freedom to offer his help around the house and hold races with his brother. He doesn't let anything keep him down and it is that special drive that makes him the most influential and inspiring person that I have ever known.
As long as he can, he will keep rolling with the punches and smiling all the way. And we will help him because he needs us to. He wills us to.
Roll on, Hunter. Roll on...