Newport Beach resident, who started nonprofit after son’s Duchenne diagnosis, won’t stop fighting

Shock. Denial. Pain.

These were the emotions that Newport Beach resident Debra Miller was feeling in November 2002, when her only son Hawken, 5, was given the grim diagnosis of Duchenne Muscular Dystrophy.

As Mother’s Day quickly approaches, Debra now has more positive words to describe what it means to have Hawken as her now 25-year-old son.

Pride. Honor. Integrity.

“He just goes forward,” she said. “He just goes.”

Miller and her husband, Paul, started the nonprofit CureDuchenne in 2003 to try to find a cure for her son’s illness. At the time, there were no treatments really available for the genetic disorder, which leads to muscle degeneration and weakness due to the alterations of a protein called dystrophin.

Nearly two decades later, CureDuchenne’s work has helped increase the life expectancy of those living with Duchenne by almost a decade.

The first FDA-approved drugs that treat Duchenne have also been introduced, though those currently are for specific mutations of DMD that do not apply to Hawken.

Debra calls the birth of her son the greatest thing that has happened to her. At the time, she thought she had it all figured out as a career woman who had a good job in advertising sales.

Debra Miller and her son, Hawken.

(Scott Smeltzer / Staff Photographer)

CureDuchenne provided an opportunity for the family but also challenges. Debra had to be away on business often. She leaned on her mother, Marilyn, better known as “Mumsy,” who liked to spoil Hawken before passing away in 2007.

“I remember her saying that this is a marathon, not a sprint,” Debra Miller said. “She said, ‘You take care of Hawken, and I’m going to take care of you.’”

Hawken and his family were traveling on Coast Highway shortly after his grandmother died and the moon caught his eye.

“It was the biggest full moon I had ever seen,” he said. “It was stretching over the highway completely. Since then, every time there’s a full moon we call it a ‘Mumsy moon,’ and we remember her and say a prayer. I have full faith that she’s in heaven looking down on me, hopefully proud of what I’m doing.”

Hawken is wheelchair-bound most of the time, and he has adjusted extremely well. He graduated from Sage Hill School, then USC in 2019 with a degree in journalism. He writes feature stories for BioNews Services.

Hawken recently moved into an apartment near Fashion Island with a roommate. He still works with a physical therapist and sleeps with night splints, though his mobility has decreased somewhat. In his post-college life, he said things like getting off the toilet and getting into the shower have become more difficult.

Newport Beach resident Debra Miller started the nonprofit CureDuchenne after her son Hawken’s diagnosis.

(Scott Smeltzer / Staff Photographer)

“I’ve compensated for that,” he said. “We’ve hired two caregivers, which is new for me for as well. I’ve always wanted to be independent. I think it’s important to eventually be your own person. I think my mom has done a very good job preparing me for the real world, constantly reminding me to eat my vegetables.”

CureDuchenne has also provided benefits for other Orange County families. Luci Nilson of Mission Viejo, whose son, Henry, was diagnosed with DMD in 2011 at the age of 3, is another member of the community.

Nilson said the nonprofit has provided a huge benefit for her son, now 13, who underwent a huge scare after surviving a severe case of COVID-19 in January. Because of the Duchenne, he is a chronic steroid user, which weakens his immune system.

At the time of his Duchenne diagnosis, Luci Nilson said she received similar words from the doctors as Debra Miller had years earlier.

“We were told, ‘There’s nothing you can do,’” she said. “We were told that he was going to lose the ability to walk by age 10, and that he likely wouldn’t see his high school graduation. We were told, ‘Go home and love your child — and by the way, don’t go home and look on the internet because it’s just going to scare you.’”

Nilson decided to reach out and find like-minded people, and she met the Miller family.

The Nilson family of Mission Viejo. Henry Nilson, second from left, was diagnosed with Duchenne Muscular Dystrophy at age 3.

(Courtesy of Lucy Nilson)

“I felt like these were people who were doing something,” she said. “Finding that, the light went on. That was life-changing. Family and friends are there to support you, but unless you get this diagnosis and you’re living with it, no one other than another Duchenne mom has walked that path before.”

Nilson said her family now lives with hope and chooses happiness.

There could be good news on the horizon. Dr. Michael Kelly, the CureDuchenne chief scientific officer, said the next round of DMD exon-skipping drugs and gene therapy drugs could have wide-ranging benefits. After undergoing clinical trials, the drugs could be approved in the next several years.

“I expect that’s going to change the lifespan of these boys yet again,” Kelly said. “I think we’re on the cusp of a tremendous change that we’ve been working toward for the last 10 to 15 years.”

It has definitely been a process. Few understand that better than the Miller family.

Hawken Miller appreciates Mother’s Day, but he doesn’t really need a holiday to know just how much his mom means to him.

“I don’t think there’s anything I could do to repay her for how much she’s loved me and how much she’s done for me,” he said. “The best thing I can do is to reciprocate that love and to pursue the opportunities that I have … That kind of turned into my personal mantra, focusing on what you can do and not what you can’t do. That’s really carried me through a lot.”

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