Sunday, June 02, 2013

‘Dusty’s Trail: Summit of Borneo’ (2013): Interview with Catherine Jayasuriya


During the illustrious and world-renown Cannes Film Festival, which just celebrated the close to its 66th year, the St Tropez International Film Festival took place next door in Nice, France from May 13th-17th. One of the films to feature at this year’s St. Tropez Film Festival was: ‘Dusty’s Trail: Summit of Borneo’ (2013), a labor of love documentary about the Duchenne disease suffered by young boys around the world. The film by newcomer writer/director/producer Catherine Jayasuriya and produced by Allan Smith of Dreamquest Productions held its premier at the 2013 Newport Beach Film Festival, and most recently held it’s international premier in the south of France at the St. Tropez Film Festival.

‘Dusty’s Trail’ is named after Jayasuriya’s son, Dusty, who has suffered from muscular dystrophy, a crippling muscle condition that affects thousands of boys around the world. It is a growing issue of concern as one in every 3,500 boys in the world suffers from the fatal disease and there is yet no cure. Dusty is now in his twenties and he has endured the debilitating condition for most of his life. Having suffered for so many years in silence, Dusty’s mother Catherine decided to take it upon herself to turn the interminable pain into a positive and progressive movement towards awareness of the Duchenne disease. In her movement, Catherine began and international coalition for Duchenne awareness, through which she galvanized an annual mountain climb of Mount Kinabalu in her native land Borneo. The journey of the founding of the Coalition Duchenne is depicted beautifully in this lyrical documentary about one young man’s everyday uphill battle against a fatal disease and his mother’s exodus to lead a group up a mountain in Dusty’s honor and for the awareness of Duchenne. -Vanessa McMahon

I interviewed Catherine Jayasuriya during the 66th Cannes Film Festival while her film was playing at the nearby St. Tropez Film Festival. Here is what she had to say:

ME: Can you tell us a bit about Duchenne and why do only boys have it? When was it that you first realized your son had the disease?

CATH: Duchenne muscular dystrophy is a progressive muscle wasting disease. It is the most common fatal disease that affects children. It occurs in 1 in 3,500 male births, across all races, cultures and countries. It can happen to anyone. Duchenne is caused by a defect in the gene that codes for the protein dystrophin. Dystrophin is a vital protein that helps connect the muscle fiber to the cell membranes. Without dystrophin the muscle cells become unstable, are weakened and lose their functionality… Duchenne is an x-linked disease, which means that boys are affected, and rarely girls. Boys have an x and a y chromosome whereas girls have two x chromosomes and hence a ‘back up’ gene. Dusty was diagnosed with Duchenne when he was six years old. He started falling a lot, and had difficulty climbing stairs. Because Dusty was our first child, we really didn’t know the symptoms, and our doctors did not recognize it.

ME: Can you tell us what is Coalition Duchenne and how did you go about building this?

CATH: Coalition Duchenne is a non-profit charity I founded in 2010 to raise global awareness for Duchenne through fundraising events, to fund research to find treatments and a cure for Duchenne. Coalition Duchenne is focused on funding cardiac initiatives. We have recently entered into an agreement with Cedars Sinai to fund a study that could help boys with Duchenne by using cardiac stem cells.

ME: When did you first decide that you felt you had to make a documentary about Duchenne as part of the awareness of this disease?

CATH: I had always wanted to do a film of some sort to do with Duchenne, and I started writing a screenplay five years ago, but then after we organized our first Expedition Mt. Kinabalu in 2011, I decided that doing a documentary about the climb and Duchenne would really tell the Duchenne story and raise awareness. I just wanted the world to know what our boys with Duchenne go through. But I really wanted to convey an uplifting hopeful message. Entwining the doctors and scientists talking about Duchenne with the adventure of climbing the mountain provided a good vehicle.

ME: In the film Dusty is always smiling. He smiles so much he glows. Why is it that he seems happier than everyone else around him? Do you suppose that by having Duchenne he is grateful for every day he is alive? And also perhaps because he feels how much he is loved?

CATH: Dusty has always been a happy person from the day he was born. He just lights up a room because he has a positive energy about him. He was that way before we even knew about Duchenne, and once he started getting weaker, his positive attitude just shone through. We really went through Duchenne as a family, one day at a time, and we tried not to dwell on any of the negative aspects of the disease, and Dusty picked up on that. We turned every negative thing that happened into a positive opportunity and possibility. And that is sometimes difficult, as it has been a constant loss of Dusty’s physicality. We used a lot of humor in dealing with Duchenne, and we have a good laugh every day even when the going is tough. Dusty definitely feels the love from his family. His brother and sister are all best friends and they get along so well.

ME: In the film Dusty meets Obama. How did the president get to know about Dusty and did the president help at all with Coalition Duchenne?

CATH: In 2011, we all had the opportunity to privately meet President Obama, at the White House in the Oval office. This was Dusty’s wish through the Make-a wish Foundation. It was a wonderful experience, and we told the President all about Duchenne and our cause. The President later wrote a letter to Dusty saying that he carries Dusty’s story in his heart. We did invite him to climb Mt Kinabalu, and he did say he would love to do that one day!

ME: In the film, you climb a mountain in Borneo. Why this mountain? And why is climbing a mountain symbolic for Dusty's illness in this film?

CATH: Every year, we climb Mt Kinabalu, a 13,455 ft mountain in the Malaysian state of Sabah in Borneo. We climb to raise global awareness for Duchenne, and last year we had 62 climbers from 15 different countries. This year we have 150 spots and they are filling up fast. I grew up in Sabah, and my grandmother is Kadazandusun, an indigenous tribe of Sabah. Mt Kinabalu is a symbolic mountain for me as it has been a silent reminder of time passing. The mountain was like a loyal friend in my life, constant and unchanging. It was witness to all that was happening. Mt Kinabalu anchors me to Sabah, and it’s my home. I had always wanted to climb the mountain with my kids. When Dusty had the diagnosis of Duchenne, I knew that dream of climbing with him was shattered, so I decided that I would climb for him and all the other boys like him with Duchenne.

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