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.
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.
Despite the harsh conditions, they were able to raise a large banner near the peak, and a smaller flag at the summit, honoring boys worldwide afflicted by Duchenne.
The expedition was big news in Malaysia, and Dusty became a local celebrity.
“I ended up being an ambassador for Duchenne,” he said.
Back home in Newport Beach, Dusty has resumed taking an experimental drug, Ataluren, which is intended to slow the progression of Duchenne. He also takes heart medication, and must undergo regular testing of his heart and lungs to check for signs of deterioration.
But, as always with Dusty, more plans are in store. On Nov. 11, Coalition Duchenne is holding a benefit concert at the Galaxy Theater in Santa Ana, featuring a long line-up of respected musicians. Among them: keyboardist Terry Lawless, who has performed with U2; veteran drummer Michael Bedard, best known for his work with “American Idol” winner Jordin Sparks; Michael Olivieri, Michael Ubaldini and Doc Pittilo. Lucas will play bass with his band Final Crush.
Of course, Dusty will be there as the event’s host and overall inspiration, and I’d urge anyone with a free evening and $20 in their pocket to attend. For information, visit https://www.coalitionduchenne.org and help keep Dusty’s hope alive.
There’s more to Hubbard’s PTA appearance
Just a quick note regarding Newport-Mesa Supt. Jeffrey Hubbard, who is due back in court Thursday on charges of misappropriating funds during his previous stint as Beverly Hills schools chief.
I attended the Corona del Mar High School PTA meeting where Hubbard spoke Wednesday. As previously reported, Hubbard’s appearance was one of his routine school visits to discuss budget and teaching issues (“Hubbard: Details to come after trial,” Nov. 3). Routine or not, from a public relations standpoint it was a convenient opportunity for Hubbard to try to demonstrate that he’s still a focused man on the job.
No mention was made of the local teachers union, which passed a no-confidence resolution against Hubbard on Thursday (“Teachers union denounces Hubbard,” Nov. 4). But, in a brief reference to his legal troubles, Hubbard lamented the attention to his “adult drama,” and promised parents that he would share “every bloody little detail” of his case after it concludes.
The most salient aspect of the meeting, however, was what was not said. If Hubbard had feared an inquisition by parents ready to condemn him for his alleged misconduct, he must have been relieved. He received just two questions, the first about why Jan. 2 would not be a school holiday, and another regarding Newport-Mesa’s status as a basic-aid district that derives its revenue from local property taxes (“Jan. 2 school day an oversight, official says,” Nov. 4)
With so many problems in public education these days, my guess is that parents care little about Hubbard’s “adult drama,” and the salacious details of his case. What they do care about is how the administrator’s legal issues impact his job performance. Whether Hubbard is convicted or not, the bottom line for us is, and always will be, the welfare of our kids.
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.