Lucas Brandom climbed a mountain for his brother.
Shivering cold, soaked to the skin and numb with exhaustion, Lucas made the excruciating final push to reach the 13,455-foot summit, then swore he'd never do it again.
But, sure enough, after several months, the memories of his aching body receded. Propelled by the strength of his brotherly devotion, the 17-year-old Newport Beach resident is preparing to climb Mt. Kinabalu on the island of Borneo inMalaysia
once again to promote awareness of the disease that has robbed his sibling of a normal life.
Dusty, now 19, has lost the use of his arms and legs, requires breathing assistance, and has severe scoliosis and a raft of internal ailments caused by the genetic
muscle-wasting disorder. In the year since I first wrote about him, the disease has continued to take its toll; he can no longer eat solid food, and subsists on a diet of Ensure liquid supplements.
Dusty has endured his plight with courage, dignity and resilience. Yet, as anyone with a seriously ill family member can attest, the affects reverberate beyond just one person.
The disease has also had a major impact on the young lives of Lucas and sister Gabriella, 12, who have grown up watching their beloved big brother suffer as Duchenne continues its cruel onslaught.
But if their situation invites sympathy, Lucas offers another perspective.
"Some people could get angry, but at the same time you could look at it as a gift," he said. "People can learn a lot from the disease, just about life. People with Duchenne don't really have egos. They're non-judging.
"It showed me how to see people for who they are, in a nonjudgmental way."
Duchenne has also influenced how Dusty and his siblings relate to each other. There's no competition or discord among them, and they are highly protective of each other.
"I've never gotten in a fight with my brother or sister," Lucas said. "It's made us all more mature."
I don't doubt it. To an outside observer, the Brandom kids appear to have a worldly wisdom and quiet intensity that's unusual to have at their ages.
While their lives revolve around a tight-knit family unit, Lucas and Gabriella have also found ways to pursue their own interests.
Lucas, who will start his senior year at Corona del Mar High School in September, is an accomplished musician and plays bass in the band Final Crush. He practices at least four hours a day and hopes to study music in college.
Gabriella, who is home-schooled, loves to bake and cook vegan
meals from scratch. She has also discovered a gift for storytelling, and composes letters to Dusty as if the characters she invents have written them.
"They have their own secret language," said their mother, Cath. "Their ages are different, but somehow the age doesn't matter."
The family also rallies behind the charity started by Cath, Coalition Duchenne, which raises funds to advance research into treatments for the cardiac and pulmonary damage caused by the disease.
The nonprofit also organized last summer's mountain climbing expedition to generate awareness of Duchenne.
Dusty was able to make the difficult journey to Borneo then and waited at the hotel with his father, Neil, and Gabriella, while Cath, Lucas, and 33 other climbers from around the world ascended the mountain during an unusually fierce storm.
The second Kinabalu climb is scheduled for August. This time around, Lucas plans to train beforehand, and will be accompanied by two friends, Ian Henderson, a recent CdM graduate, and Evan Romano, who will graduate next year with Lucas.
A group of 60 climbers from around the world will join the effort, including a documentary film team and the U.S. ambassador to Malaysia. The expedition is generating a good deal of publicity there; last week Cath was interviewed about the climb on Malaysian television.
Uncertain if he could once again tolerate the long journey and conditions in Malaysia, Dusty has decided to stay at home in Newport Beach, along with Neil and Gabriella.
There's no trace of self-pity or bitterness in Dusty, who said he simply "tries to deal with things as they happen."
He thinks it's "really cool" that Lucas will once again trek to the mountaintop on his behalf.
"It's really great that everyone is supporting me and all the other boys who have Duchenne."
I asked Lucas to recall some of his favorite memories of he and Dusty together. He talked about playing at the beach when they were little and Dusty could still walk. He remembered an elementary school talent show where they performed together. Lucas was on drums and Dusty was in his wheelchair, playing guitar.
But that was then. Now, as Lucas looks ahead to his second attempt to scale a mountain for all the boys afflicted by Duchenne, he knows it will be Dusty he'll be thinking about.
"He motivates me to climb," he said.