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By Megan Forrester | Special to the NB Indy
Sports can have an extremely positive impact on a father-son relationship. Whether it’s learning how to ride a bike, throw a baseball or swim a lap, the practice of sports creates a bond between any two people.
For Newport Beach resident Paul Miller, he said he dreamed of teaching his son to play hockey. Since Paul grew up playing the sport in his home state of Minnesota and was even drafted for the North Stars in 1982, his passion for hockey was something he yearned to share with his son Hawken.
But, on November 16, 2002, five-year-old Hawken was diagnosed with Duchenne Muscular Dystrophy (DMD), a rare muscular disease that affects 1 in 5,000 boys that has no cure. Those with the disease typically lose the ability to walk and small tasks like getting up from a seated position or getting dressed are a challenge.
As soon as they realized the severity of DMD, Paul went to his garage and got rid of all the sporting equipment he knew Hawken would never be able to use. It was no longer about fulfilling his dreams of playing hockey with his son, but merely making Hawken feel comfortable and empowered.
“We rolled up our sleeves and said, ‘All right, let’s focus on stuff that he can do,’” Paul said. “And I got involved with Boy Scouts, got him involved with photography and we did a lot of traveling instead of being on sports teams.”
With Father’s Day approaching, it is important to reflect on the relationship between a father and their child. Paul emphasizes a philosophy of optimism, love and acceptance – no matter the challenges ahead – to allow for a deep and interconnected relationship between himself and Hawken.
One way Paul showcases that love is by making activities that seem like a pain to be actually fun and worthwhile. With DMD, Hawken required stretching every night to maintain muscle strength. Whether it was watching “Glee” or Paul tickling Hawken, each night of stretching created a tighter bond between them.
“What broke the ice and developed us into being able to talk about almost anything actually was the nightly routine of physical therapy that we have to do,” Paul said. “I’m convinced that the appropriate physical contact of stretching somebody was a safe zone. My wife and my friends would laugh about the stuff that I would learn from school or what was going on with other kids from Hawken and because I think that it was almost like this stretching was a truth serum.”
Their relationship also increased throughout their travels together, with Hawken visiting a total of 13 different countries, including China, Russia and Costa Rica. Paul would carry Hawken on his shoulders while walking through the mausoleums in Vietnam or on a steep incline hike with Hawken’s fellow Boy Scouts.
Despite Paul showing Hawken countless opportunities he can accomplish while dealing with DMD, he said he is reminded of the burden that he cannot fix everything in Hawken’s life.
“Dads want to fix things,” Paul said. “‘My tire doesn’t work, Dad, I have a flat tire,’ and we will fix the tire. The challenge that was really tough is that Hawken would say, ‘Hey, Dad, I can’t run across the playground.’ Well, I can’t fix that like I can fix a bike tire.”
In order to search for a cure for DMD, Paul and his wife Debra founded CureDuchenne, a Newport Beach-based nonprofit organization that focuses on fundraising for research and possible treatments for patients of Duchenne. By conducting 44 research trials and contributing to funding the first FDA-approved Duchenne drug, Hawken said that his parents’ work showcases their love for him and other families around the world.
“While they were both very busy and traveled a lot, I understood on a deeper level that they weren’t doing it for themselves or to make money, they were really trying to do it for me and trying to make my life and other boys and men with Duchenne their lives better too,” Hawken said.
Despite the inevitable corny jokes and embarrassing behavior most dads bring to the table, Hawken said that DMD helped bring him closer to his father.
“When I was younger I was more embarrassed that my dad was around but now I’m learning to not care as much and it’s kind of become a friendship and a father-son relationship,” Hawken said. “I am blessed to have that relationship with my dad because I know that doesn’t exist for a lot of people. So I’m really happy that we are able to share all these experiences and laughs and tears together.”
With plans to either go camping or take a road trip to Minnesota together, Paul and Hawken will celebrate Father’s Day as they always do – cherishing their relationship and spreading joy each and every moment.
“I’m a glass half full guy,” Paul said. “Even in crazy moments, I would find something funny or to giggle at even in a very serious moment. We will not let Duchenne rob joy from our lives. I’m just grateful Hawken is my son and I’m grateful I get to be his father. I would challenge every dad to approach it that way.”
For more information on CureDuchenne, visit https://www.cureduchenne.org.
