USC graduation: Newport Beach’s Hawken Miller defies odds, rare disease to get degree, Washington Post internship
He prayed. He endured years of pain. He fought hard against a body that too often betrayed him. He ate his vegetables and took the best pills his parents could find for him.
Hawken Miller stayed alive.
If you look back at the life of one 22-year-old man from Newport Beach who graduates from USC on Friday, May 10, you can find statistics that suggest he should have died a long time ago. His mother, Debra, will tell you those numbers are merely historical data points, and have no bearing on Hawken’s future.
Hawken’s journey from a kid with a lethal childhood illness to a college graduate can be described in one word:
“I have defied a lot of things,” he said. History is one of those things.
And now, he and his family are talking about what happens next. A new job is on Hawken’s horizon. He’s a journalist, and he’ll be taking a job as an intern at the Washington Post, almost 3,000 miles from home. He’ll be on his own.
What happens next is the place where the Millers have always dreamed about.
“We know we have a future,” said Paul Miller, Hawken’s proud father.
Paul and Debra Miller will cry as their son graduates today because they know how difficult building a future can be.
He was 4 when his parents noticed something was wrong.
He played soccer, and Hawken couldn’t keep up with the other kids. Paul Miller remembered the time his son had trouble roller-blading home from lunch.
Hawken had been named by Debra, who had been looking in a book of baby names and decided to combine Hayden and Hawk. That name made Paul, a former minor league hockey player, very happy because it sounded like Hakan (Loob) who was a 50-goal scorer in the National Hockey League.
Hawken had huge calf muscles, which his parents thought made him a budding athlete. In reality, his over-size calves were a tell-tale symptom that one of their friends recognized.
A friend suggested that Hawken might have something called Duchenne muscular dystrophy. That was the first time the Millers had heard “Duchenne.” Those words launched the Millers, especially Debra, on a quest to get a doctor to confirm their fear.
“I was the hysterical mom,” said Debra, who forced the medical community to pay attention to her son.
Finally, after checkups and tests and persistence, Debra got the confirmation in November 2002. Duchenne is a genetic disorder in which muscles get weaker over time, and there is no cure.
“The doctor said, ‘Are you sitting down?’” Debra remembers. Her first internet search for the disease showed that, in history, boys with Duchenne often can no longer walk by age 12, and their average life expectancy is the early 20s.
Their world changed.
“I would go into the closet and pray and cry and cry and pray,” Debra said. She wanted to keep their son positive and happy, so she thought of a way break the news to him.
Debra remembers telling Hawken that God had different plans for him.
“You won’t be an athlete,” Debra said. “You were meant to be a musician or an author.”
Hawken said he was a bit relieved. He didn’t want to be an athlete anyway.
“You can work toward something positive, or you can become a victim,” Debra said. “He wasn’t going to become a victim.”
Effort pays off
The diagnosis sent the Millers on a quest. They set out to cure Duchenne.
They rented a theater and held a fundraiser, which was attended by 85 people. They talked about the disease and hired actors to put on a show.
“We made people cry, and we left some of them laughing,” Debra said.
The next day an anonymous donor gave them $250,000.
“We thanked God,” Debra said.
And they opened an office in Newport Beach and launched CureDuchenne, in which they poured as much money as they could into research, specifically mouse studies. Their goal: Find a therapy that could slow the progression of the disease. For years, they worked to raise money.
Their effort paid off. They made a $1.3 million donation to research in the first year. Then, as time passed, the donations and investments grew. There was a $2 million donation, then a $15 million donation.
Then, they were able to coax a $40 million investment into more research. CureDuchenne became a force for genetic research. The once-tiny organization has been instrumental in clinical trials around the world. They now have 16 employees with offices in four U.S. states.
Their effort is now a three-pronged attack. CureDuchenne raises funds for gene therapy, IV infusion therapy and a program called CRISPR, in which new DNA-editing treatments are tested on dogs.
Through it all, Debra Miller kept her son (aside from the occasional fundraising speech) out of the race to find a cure.
“He didn’t need to be burdened,” Debra said.
‘Gives them hope’
Hawken Miller lives in a house with 13 roommates near the USC campus. It has a dusty couch on the porch, and he lives as typical a college lifestyle as he could make it.
They call the house the “Bro-dega.”
His roommates, which are all part of a campus organization called USC Christian Challenge, helped him with household chores, cooking and stretching exercises. He helped them with some administrative functions like dealing with the landlord, and he gives them rides in his van.
“The parents of his roommates say Hawken gives them hope,” Debra said.
Hawken writes a column for MuscularDystrophyNews.com.
“Journalism is appropriate for me,” he said. “I can give a voice to a lot of voiceless people.”
Paul Miller said his son’s experience at USC was “perfect.” Paul originally had reservations about sending his son there. He was afraid the campus was filled with “beautiful people” who wouldn’t appreciate a kid with a disability.
“He crushed it,” Paul said. “I couldn’t be more pleased. Hawken created a space for himself and it worked.”
Hawken thinks a lot about his future, and how he is going to carve out a career in journalism.
What Hawken tries not to think about is Duchenne.
“I think it’s a part of who I am, but it doesn’t speak for me,” he said.
He appreciates the hard work his parents have put in to find a cure, but he knows whatever they find is not likely to benefit him. The process of getting new drugs approved takes too long.
“I don’t care much about the outcome,” Hawken said. “God has placed me here for a reason. I need to bring the light I have to other people.”