to go. they stumble, fall, then they're in a wheelchair. >> reporter: many people might hear this information and become paralyzed. but you, you have hit the ground running. >> i had to. i had to. there really isn't any treatment for us. and just knowing that i have a chance -- i have this big of an opening to make it. you know? that jonah has a chance. so that's, that's what keeps me going. >> who is that? >> reporter: she is on a crusade working 24/7 to find a cure for her son before the disease renders him unable to move, communicate and breathe on his own. she started a nonprofit, jonah's just begun to raise awareness and fund research. impossible, she says, without the help of family and friends and working day and night to find other children with san felipo type c that will participate in the first study ever of the syndrome.