Meeting Mattie Stepanek

Mattie's mother, Jeni, has the same disease he does, but she didn't know she had it until after she had given birth to Mattie and his three siblings.

"I was very tired and in a lot of pain but assumed that was the stress of having such sick children," Jeni says. "When I was diagnosed with the adult version of muscular dystrophy, which is more muscle impairment, they went back and checked the children. Two of them had already died, but Mattie and his brother Jamie were still alive. They were diagnosed with the infant-onset [version], which is neurologically devastating and always—except for in [Mattie's] case—fatal during early childhood."

Mattie's sister, Katie, died at 2 years old; his brother Stevie died at 6 months; and his brother Jamie died at 4 years old.

Mattie says three things keep him going. "Expressing my feelings and then the opportunity to share it with others is just such a gift," he says. "Another thing is how people help me through it, like my mom, my friends, my dreams. And another very important factor of why I'm here today talking to you is prayer."