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Apodaca: Dusty continues on his path of purpose

November 05, 2011|By Patrice Apodaca

Last June, I wrote about my neighbor Dusty Brandom, an extraordinary young man who suffers from a debilitating degenerative disease called Duchenne muscular dystrophy ("Dusty's road has been winding, rewarding," June 18).

At the time, Dusty was about to graduate from Corona del Mar High School and had just returned from Washington, D.C., where he met with President Obama at the White House. The Orange County chapter of the Make-a-Wish Foundation had arranged the meeting.

Dusty will turn 19 on Thursday, and I thought it a good time to give readers an update. For despite his illness — a genetic muscle-wasting disorder that has rendered his arms and legs virtually useless, damaged his organs, warped his spine and causes him incessant discomfort — Dusty remains determined to live a purposeful and meaningful life.

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Since my last writing, Dusty accompanied his family — parents Cath and Neil, and younger siblings Lucas and Gabriella — to his mother's native Malaysia. The nonprofit organization Coalition Duchenne, run by Cath, had organized an international mountain-climbing trip on the island of Borneo to raise awareness for the fight against the disease.

The six-week trip in July and August was a constant test of Dusty's will. Accommodations had to be made with airlines to transport Dusty's wheelchairs and other medical equipment that helps him breathe. His parents brought along a metal ramp to get Dusty in and out of buildings in Borneo that lack disabled access.

They also had to arrange for a van modified with a makeshift wheelchair lift. On a test run of the two-and-a-half hour drive from their hotel to the side of Mount Kinabalu, the 13,455-foot-peak the expedition was set to climb, the bumpy ride on the pothole-ridden road proved too painful for Dusty to endure, and he had to turn back.

During other outings to nearby islands, Dusty had to be lifted manually, wheelchair and all, on and off of boats, a difficult, precarious task that drew assistance from helpful passersby.

On the day of the climb, Dusty waited excitedly at the hotel with Neil and Gabriella, while Cath, Lucas and 33 other climbers from around the world set off to conquer the mountain.

The weather had been agreeable in the days leading up to the climb, but then turned nasty. During the nearly two-day ascent up the mountain's granite face, the group fought against driving rain, bitter cold and low visibility.

"It was like a waterfall coming down the mountain," Cath said.

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