My disease is a very rare form of muscular dystrophy, called disautonomic mitochondrial myopathy.

If it came to a magic genie, I would ask him for two extra wishes. One would be that no one would have to live with the muscular dystrophy disease or any disease. And the second one would be world peace, that we just stop fighting, talk about things, and we could live in harmony once again, like God intended us to do.

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?'

I feel that God has given me a very special opportunity that I should not let go to waste. I use the gift he has given me.

I've gotten books published. I've met famous people that are very nice. I look back and I say, 'Wow. Thank you, God, for giving me this gift. And thank you for helping me to keep going.'

I want to be remembered as a poet, a peacemaker, and a philosopher who played.