Parents of son diagnosed with Duchenne muscular dystrophy are hopeful cure will be found soon
NEWPORT BEACH, Calif. (KABC) -- A couple has dedicated their lives to finding a cure for Duchenne muscular dystrophy after their only son was diagnosed with the rare genetic disorder and they said they're closer than ever to making a breakthrough.
Hawken Miller remembered the day his mother told him he wouldn't be an athlete, but he could do other things because his muscles were different.
"I think for me, that gave me a lot of peace knowing that it wasn't something I was doing wrong. It was just kind of part of who I was, that I, you know, wasn't as strong as these other kids," Miller said.
He was 5 years old and diagnosed with Duchenne muscular dystrophy.
The rare genetic disorder mostly affects boys. Those with the disease experience progressive deterioration of their muscles. Usually, the heart is the last to go.
Mom, Debra Miller, remembered the moment doctors told her there was no cure.
"Go home and love your child. He's going to stop walking at 10 and he probably won't make it past 18," Debra remembered the doctor saying.
"After discovering how little information was available on Duchenne, these parents started a nonprofit, CureDuchenne, now funding research toward a cure and resources for other families going through the same journey.
"We funded over 44 research projects. Sixteen of those have progressed into human clinical trials. Three of them are in phase three trials right now which means it's the last step before, hopefully, an approval. So we've come very, very far," Debra Miller said.
That determination is clearly embedded in this family. Dad became his son's arms and legs since day one to protect Hawkens' muscles. After a downhill hike to a waterfall in Costa Rica, Hawken riding on his dad's shoulders, Paul Miller remembered seeing his son in tears.
"I go, 'Hawk what's wrong? Did you get hurt on the hike?' He goes, 'No,' he said. 'I just...you're not always gonna be able to do that,' and I looked him in the eye and I said, 'Yes I am," Paul Miller said.
At 25 years old, Hawken was outliving his life expectancy and found his calling as a journalist, sharing his story to spread awareness, leaning heavily on his faith and family for strength.
"No one ever knows when they're gonna go and I think I just try to live each and every day to the fullest and I'm grateful for every breath that God's given me," Hawken Miller said.
The nonprofit was scheduled to host a free workshop on Oct. 1, in Pasadena open to any families affected by Duchenne. Anyone interested can register here.
