Apodaca: Dusty’s road has been winding, rewarding
Dusty Brandom has endured more suffering in his 18 years than most of us can imagine.
Trapped in a wheelchair, his body a constant source of pain and disappointment, Dusty has every reason to be angry at the lousy card he’s been dealt. He has a degenerative genetic disease called Duchenne muscular dystrophy, which has robbed him of mobility and caused a raft of other terrible symptoms.
Yet the Newport Beach teen is full of hope and promise, and it is those very qualities that led him to the White House earlier this month, where he met President Obama.
He had made the request to meet the president through the Make-A-Wish Foundation, and he’d been waiting for more than two years for the arrangements to be finalized. Then in May, he got the news that the meeting was on, and within a few weeks he left for the nation’s capital with his parents, Cath and Neil, and younger siblings Lucas and Gabriella.
Dusty said he wanted to meet Obama because, “I was inspired by his message of hope. It helped me with a lot of what I have to deal with.”
There is no cure for Duchenne, which afflicts one out of every 3,500 boys. The disorder lays waste to muscles, initially causing weakness and difficulty walking. By adolescence, most are wheelchair-bound, and their respiratory and cardiac systems have begun to deteriorate.
I live a few doors away from Dusty, and I’ve observed over the years the progression of his disease. I remember when he could still walk, play the guitar and tinker with Legos. Those times are long gone.
These days, Dusty has largely lost the use of his arms, he has difficulty breathing and swallowing, and he’s plagued by the discomfort of scoliosis — a collapsing of the spine caused by Duchenne. Even sleep proves elusive.
But even though the disease has sapped Dusty’s physical strength, it hasn’t diminished his will to live a full life, or his inherently sweet nature.
Shortly after his return from Washington D.C., Dusty greeted me at his home with his bashful, ever-present smile, and talked about his meeting with Obama and his plans for the future.
For the past several years, Dusty has continued his schoolwork at home, and has managed to complete all his high school requirements. Next week he will graduate from Corona del Mar High School.
After graduation, he plans to pursue his interest in digital art. He is able to manipulate a mouse, which allows him to create drawings on his computer.
Dusty’s inspiration comes in part from his love of the online role-playing game “World of Warcraft,” made by Irvine-based Blizzard Entertainment. One of Blizzard’s artists has agreed to mentor Dusty, and they’ve been meeting regularly. Dusty is also considering taking a class in digital art at Orange Coast College.
Dusty and his family have also founded a new nonprofit, Coalition Duchenne, to coordinate organizations around the world to combat the disease. The charity is planning a mountain-climbing trip to Borneo in a few months to generate publicity and raise funds. Dusty will wait at the base while an international team treks to the 13,455-foot peak of Mount Kinabalu.
While he discusses these plans with palpable enthusiasm, it’s when Dusty talks about meeting Obama that he literally beams.
On the day of the meeting, the Brandoms were given a tour of the White House — “It reminded me of a museum,” Dusty said — and at one point they were introduced to First Dog Bo. Afterwards, they waited in a room in the West Wing, where they caught a glimpse of Secretary of State Hillary Clinton walking by.
Suddenly, a door to the Oval Office opened, and President Obama appeared.
“He said, ‘Hi Dusty.’ He came over to me and said he’d heard all about me,” Dusty recalled. Apparently aware that Dusty is unable to shake hands, Obama placed one of his hands on top of Dusty’s, and another hand on Dusty’s shoulder.
The president led the family into the Oval Office, where they talked for about 20 minutes. He asked about Dusty’s post-graduation plans, and presented him a gift bag filled with chocolate candies, commemorative coins, a booklet on the Constitution, and signed books and posters.
Dusty’s family told Obama about the upcoming mountain-climbing trip, and gave him a book on Borneo and a musical instrument from Cath’s native Malaysia.
“While we were there, he kept saying, ‘Thank you for visiting me,’” Dusty said, adding that the thought that the president “was actually thinking of me” was overwhelming.
Founding a new charity, studying digital art, and meeting the president of the United States — any one of these accomplishments would be impressive for a young man about to graduate from high school.
But Dusty isn’t just any young man. Fate has been cruel to him, but rather than dwelling on what’s lost, he stays focused on what’s possible.
And Dusty’s determination and capacious spirit make me believe that what’s possible is quite a lot.
PATRICE APODACA is a Newport-Mesa public school parent and former Los Angeles Times staff writer. She is also a regular contributor to Orange Coast magazine. She lives in Newport Beach.