Cannes

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 Duchenne muscular dystrophy, a disease that affects boys and young men 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 suffers from Duchenne, 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 Duchenne. In her movement, Catherine began a charity to raise awareness for Duchenne through which she galvanized an annual mountain climb of Mt. Kinabalu in her native land Borneo. The journey of the founding of 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.

ME: This is the first film you have directed. How has this journey been? And how long did it take you to pull off?

CATH: Directing this film came very naturally to me. It’s a deeply personal story, and it needed to be done with love and care. Sabah is my home, so I was familiar with everything that needed to be filmed. We filmed in Malaysia for twelve days and seven separate days in California. There were hundreds of hours of editing. I am so passionate about this project that sometimes it was probably challenging for the rest of the team!

ME: Were there any complications during filming that made the film itself as hard as climbing the mountain?

CATH: There were no complications, as this is a story from the heart, and it’s a truthful, delicate story that had to be told. The only thing harder than climbing the mountain is knowing the reality of Duchenne and what the boys and young men go through. Their (boys with Duchenne) muscles feel weak and they have trouble breathing just as we did when we got to altitude. The parallels helped us highlight the issues.

ME: You recently had your premier in Newport Beach at the NBFF and screened at the St. Tropez Film Festival in the south of France. How was that and how did audiences react?

CATH: It was wonderful to have been part of the Newport Beach Film festival. I felt it brought it around full circle, as Dusty was born and raised here in Newport Beach, attending elementary and high school, and he has been a good citizen! We had some amazing feedback regarding the film. People have gone out of their way to tell us how inspiring the film was and how it has changed the way they think about their life. Everyone has experiences with people who seemingly have no problems but somehow create them perhaps through using drugs or alcohol. Here is a young man who had real obstacles but makes the best of every minute of every day. That really resonated for people.

ME: Do you think you will continue to make films in the future?

CATH: Absolutely. I’d like to make uplifting stories that need to be seen and heard, and inspiring stories that connect us with the world around us and illuminate just who we can be at our very best.

Interview by Vanessa McMahon

View the website here: http://www.coalitionduchenne.org/

The Expedition Mt Kinabalu team gathers in Kota Kinabalu – photo by Allan Smith

Catherine and Neil – photo by Jason Wallis

Catherine at the offices of the Newport Beach International Film Festival – photo by Neil Brandom

Catherine at the summit of Mt Kinabalu with Coalition Duchenne flag – photo by Andrew Fink

Dusty and Catherine – photo Neil Brandom

Dusty meeting President Obama in the Oval Office – photo by Pete Souza Official White House Photographer

usty meeting President Obama in the Oval Office accompanied by L-R Neil, Lucas, Gabriella and Catherine – photo by Pete Souza Official White House Photographer

Dusty Brandom on a Newport Beach Back Bay trail - screenshot from Dusty's Trail