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Apodaca: A documentary for Dusty

January 26, 2013|By Patrice Apodaca
  • A still picture of Dusty Brandom from the film "Dusty's Trail: Summit of Borneo."
A still picture of Dusty Brandom from the film "Dusty's… (Courtesy Catherine…)

Imagine for a moment that you can't walk or reach out to embrace your loved ones, and that every breath you take, each beat of your heart, requires a herculean effort from your weakening body.

That is life for my neighbor Dusty Brandom and millions of boys and young men worldwide who suffer from the incurable, muscle-wasting genetic disease Duchenne muscular dystrophy, the most common fatal genetic disorder diagnosed in children.

Readers might recall Dusty from previous columns, including one in which I wrote of his meeting with President Obama at the White House in the spring of 2011. Over the years, he has battled against the progression of devastating symptoms that now keep him confined to a wheelchair, in need of breathing assistance, and taking his meals through a straw. At 20, he has already outlived some Duchenne victims.

Recently, Dusty's mother, Catherine Jayasuriya — Cath to friends and family — asked me to view a documentary that she coproduced, "Dusty's Trail: Summit of Borneo."

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In all honesty, I wasn't sure what to expect. I knew that during the course of Dusty's illness, Cath had evolved into a fierce advocate on behalf of Duchenne victims and had founded the nonprofit organization Coalition Duchenne.

Indeed, the entire Brandom family, including Dusty's dad, Neil, and younger siblings Lucas and Gabriella, has fought valiantly to shed light on Duchenne, encourage the pursuit of treatments, and ensure that Dusty has a full and meaningful life in spite of his physical limitations.

As part of that effort, Cath recruited 62 participants from around the world last August to climb to the 13,435-foot summit of Mount Kinabalu in Malaysian Borneo. A native of Malaysia, Cath spearheaded the expedition — the second of its kind — to raise awareness about Duchenne.

She didn't stop there. Cath also founded a production company, Present Moment Yogi Productions, and hired an award-winning film crew to record the event. Back in Newport Beach, the production team continued work on the documentary, which weaves together the story of the climb with background on Dusty and Duchenne.

When I arrived at the Brandom's home, I was introduced to Mindy Cameron, who appears in the film. Mindy also lives in Newport Beach and has an 11-year-old son with Duchenne. Also on hand were one of the filmmakers, Andrew Fink, who was about to make the final editing touches, and Dusty, who was seeing the film from start to finish for the first time.

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