“Expedition Mt Kinabalu”, now in its 11th iteration, is once again being organised by Coalition Duchenne. The international NGO is aimed at raising awareness of Duchenne Muscular Dystrophy, a rare condition that affects one in every 3,500 boys.
Caused by a gene defect, Duchenne is a progressive disease that causes the weakening and dysfunction of muscle cells. By age six or seven, those with the condition start to get fatigued easily, tend to fall over, and have difficulty walking and climbing.
By age 10 to 12, most boys are in a wheelchair.
Coalition Duchenne was co-founded in 2010 by Catherine Jayasuriya and her now 30-year-old son Dusty Brandom, who was diagnosed with the condition when he was six.
“This was in the 1990s, and it was a very devastating diagnosis,” said Jayasuriya, who was born and raised in Kota Kinabalu to a father of half Sri-Lankan, half-Kadazan heritage, and a mother of English descent.
According to her, few treatment options were available at the time, with barely any information online. Whatever she could uncover was largely negative, leaving her with the impression that there wasn’t a bright future ahead for her boy.
“It was very shocking for us. Our child was – as with everybody’s child – the most perfect in the world, and it was unbelievable to think he had this devastating future.”
Thankfully, things have changed since then. Today, there are over 60 groups worldwide, including Coalition Duchenne, dedicated to shedding light on the disease and funding research and development.
“Our mission is to raise global awareness and to find treatments and, eventually, a cure,” said Jayasuriya, who also serves as the group’s executive director.
While “we still have a long way to go” in terms of R&D, she added that great leaps have already been made, with gene therapy being a promising prospect for patients.
As for Expedition Mt Kinabalu, it is her and the coalition’s contribution to the global Duchenne community. Over the years, the initiative has attracted more than 700 climbers from all over the world to Sabah, including as far as Tanzania and Ukraine.
The idea, Jayasuriya explained, stemmed from the fact that Mt Kinabalu has long loomed over her hometown, and she had always dreamt of climbing it with her son. Those dreams, sadly, were dashed when Duchenne left him wheelchair-bound at age nine.
“So, I thought, while we are waiting for treatments and a cure, let’s do something different, something positive. Let’s make a difference,” said Jayasuriya, who lives in California but is currently back in her hometown for the climb.
Further motivated by the fact that few people knew of Duchenne, and wanting to bring it into the public consciousness, she launched the first Mt Kinabalu expedition in 2011.
The following year also saw her produce a critically acclaimed documentary, “Dusty’s Trail: Summit of Borneo”, which brought further attention to the Duchenne community. “Dusty’s Trail” received numerous accolades, including for Best Documentary in the Los Angeles Movie Awards.
This year, Coalition Duchenne will donate RM20,000 from proceeds of the expedition to Hospital Wanita dan Kanak-Kanak Sabah, to provide them with equipment they may otherwise not be able to access. These include bag valve masks or Ambu bags, as well as BiPap machines, both of which are vital for Duchenne patients.
“Over the years I have been trying to reach patients in rural areas, and it has been really difficult as they often go to their own small hospitals in the interior,” Jayasuriya pointed out. “So, I thought we should fund this hospital where children go when they’re diagnosed with Duchenne.”
As of press time, Expedition Mt Kinabalu is still open for registration, with the only requirement being that of fitness. For those who might be hesitant, she points out that people of all ages and nationalities have taken part in the past.
“We even had folks from the wingsuit community come one year and try to jump off the mountain!” Jayasuriya said with a laugh. That attempt, however, was not possible because of Mt Kinabalu’s relatively low incline, so they settled on leaping from a helicopter instead.
Additionally, this weekend’s expedition has the support of four-time Everest climber Ravichandran Tharumalingam – better known as Ravi Everest – who is slated to flag off the event.
“Ravi came with us for the climb in 2019. He was looking for causes and was passionate about what we were doing,” Jayasuriya explained.
On whether she will continue holding these expeditions in the future, the devoted mum said she would love to do so for as long as she can.
Her son Dusty, she added, is also very involved in the behind-the-scenes organisation of each expedition.
In the meantime, Jayasuriya had some words of encouragement for families affected by Duchenne: “You are not alone. There are other families out there. It’s a shared journey, and it’s OK.”
Expedition Mt Kinabalu
When:
Saturday-Monday, June 10-12
To register, send a WhatsApp message to Catherine Jayasuriya at +1 (714) 801 4616.
For more information on Coalition Duchenne, click here.