NEWPORT BEACH, Calif. (KABC) — A couple have devoted their lives to finding a cure for Duchenne muscular dystrophy after their only son was diagnosed with the rare genetic disorder, and they say they are closer to the breakthrough than ever.
Hawkin Miller recalled the day his mother told him he wasn’t going to be an athlete but he could do other things because his muscles were different.
“I think for me it gave me a lot of peace knowing I wasn’t doing anything wrong. It was just part of me that, you know, I wasn’t as strong as those other kids,” Miller said.
He was 5 years old and was diagnosed with Duchenne muscular dystrophy.
The rare genetic disorder mainly affects boys. Those with the disease experience progressive deterioration of their muscles. Usually the heart is the last thing out.
Mom, Debra Miller, recalled the moment doctors told her there was no cure.
“Go home and love your child. He’ll stop walking at 10 and he probably won’t make it past 18,” Debra recalled the doctor saying.
“After these parents discovered how little information was available about Duchenne, these parents formed a non-profit organization, Cure Duchenne, which is now funding research for a cure and resources for other families following the same path.
“We have funded over 44 research projects. Sixteen of these have progressed to human clinical trials. Three of them are currently in phase 3 trials, meaning this is the final step before hopefully approval. So we’ve come very, very far,” said Debra Miller.
That determination clearly runs in this family. Dad became his son’s arms and legs from day one to protect Hawkens’ muscles. After hiking down a hill to a waterfall in Costa Rica while Hawken rode on his father’s shoulders, Paul Miller recalled seeing his son in tears.
“I’m like, ‘Hawk, what’s up? Did you hurt yourself on the hike?’ He’s like, ‘No,’ he said, ‘just me… you’re not always going to be able to do that,’ and I looked him in the eye and said, ‘Yes, that’s me,’ said Paul Mille.
At 25, Hawken survived his life expectancy and found his calling as a journalist. He shared his story to spread awareness and drew heavily on his faith and family for strength.
“Nobody ever knows when they’re going to leave, and I think I’m just trying to live each and every day to the fullest, and I’m thankful for every breath that God has given me,” Hawken Miller said.
The nonprofit was scheduled to host a free workshop in Pasadena on October 1, open to all families affected by Duchenne. Anyone interested can register here.
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