“I do fear death. But what I actually fear is not dying. I mean, true, it will be sad. But I know that there is a better place waiting for me.”
“I never question God. Sometimes I say, 'Why me? Why do I have such a hard life? Why do I have this disease? Why do I have siblings who died?' But then I think and say, 'Why not me?'”
“The doctor said, 'He can't last a week.' And I did. And they said, 'There's no way this kid's going to last a month.' And I did. And so they said, 'Two years. He's not going to make it.' Two years. 'Five years. He can't do that.' I lived to be five years. 'He's never going to hit double digits.' And here I am, a new teenager.”
“My disease is a very rare form of muscular dystrophy, called disautonomic mitochondrial myopathy.”
“I think I may have to grow up without growing old. I think we're going to have to define differently what I'm going to be. We're going to have to define my growing up differently.”
“Expressing my feelings and then the opportunity to share it with others is just such a gift.”
“It doesn't matter how you pray. Just pray. All religions are beautiful and they all have one common belief. There's something bigger and greater than us that can give us and take from us life. It is better than the here and now.”
“You know, it's kind of hard because I really - I see kids on their Rollerblades and their bikes, and just running around, climbing trees, and I used to do that. And I loved doing that.”
“Every year, once a year, in Maryland, I go for a week and overnight camp with about 50 to 60 kids with muscular dystrophy, all ages, seven to 21. And it is really fun. I have some great friends there and wonderful counselors.”
“Maybe I wanted to have kids because you want to leave behind lessons, leave behind everything that matters to you. That's how you touch the world. But I have to reconsider what it's like to leave a legacy.”