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."
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.
As we sat down to watch, Cath placed a box of tissues in close reach. I don't mind sharing that it was needed.
What Cath and her team have created is a beautiful, heartbreaking, yet also wonderfully uplifting film. Without resorting to an overt play for sympathy or manufactured pathos, they tell their story simply and directly, with gorgeously rendered photography and editing, and sometimes wrenching testimony. That the documentary is at once poignant and hopeful reflects the care that went into its making.
The opening shots, set to music, provide a fitting introduction. They show feet walking, legs jumping and arms hugging — the types of everyday activities that most of us take for granted, but which become impossible for Duchenne victims.
The film offers expert testimony about the cause, symptoms and prevalence of Duchenne, and interviews with many people who have been touched by the disease, including one mother who lost two sons to Duchenne, and who now also advocates for effective treatments.
A few scenes were particularly powerful. In one, Cath is seen visiting a Malaysian family that couldn't afford a wheelchair for their son with Duchenne. Another segment provided a welcome spark of humor when a young man with Duchenne quipped that people treated him like Jesus because he had reached the seemingly miraculous age of 32.
Some of the most moving scenes appeared near the end of the film, with footage of climbers reaching the summit of Mount Kinabalu interwoven with those showing Dusty during a medical exam; at one point, an image of his heart shows clearly on a monitor.
In spite of all the tissues I destroyed, "Dusty's Trail" — like Dusty himself — remains inspiring and optimistic. The message is clear: Treatments to improve the quality of life of Duchenne sufferers, even one day an outright cure, are possible.
In a speech before embarking on the Mount Kinabalu expedition, Cath reminded her fellow climbers that they were there for the "boys who face a far greater challenge than any mountain peak."
I glanced over at Dusty as we finished watching the film, and saw his radiant, ever-present smile. His challenges are great indeed, but they are met with uncommon grace and strong intent to savor every moment of joy that can be had in life as it is.
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.
'Dusty's Trail: Summit of Borneo'
Producers and directors: Catherine Jayasuriya, president, Present Moment Yogi Productions, and Allan R. Smith, president, DreamQuest Productions.
Financing: Present Moment Yogi Productions
Director of photography/editor: Andrew Fink
Camera operators: Allan R. Smith, Chuck Jonkey, Andrew Fink. Additional camera work by John Mokhtarei.
Sound: Juniper Post
The film has been submitted to the Newport Beach Film Festival, and will be entered in several other festivals. For more information, visit http://www.coalitionduchenne.org.