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Apodaca: Dusty's road has been winding, rewarding

June 17, 2011|By Patrice Apodaca
  • Dusty Brandom, in chair, surrounded by his family Lucas, Gabriella, Cath and First Dog Bo at the White House.
Dusty Brandom, in chair, surrounded by his family Lucas,… (Daily Pilot )

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.

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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.

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