KOTA KINABALU: Catherine Jayasuriya has always dreamed of bringing her children up Mount Kinabalu, the highest peak in Malaysia and in her home state of Sabah.
Unfortunately, one of her children, Dusty Brandom, will never be able to make the climb.
At 29, Dusty is in a wheelchair and severely impacted by Duchenne muscular dystrophy, a muscle-wasting disease that affects one in 3,500 boys.
When Dusty was diagnosed with the rare condition in the 1990s, Jayasuriya founded Coalition Duchenne, a non-profit organisation that aims to raise global awareness and funding for the condition.
One of its latest events was the 10th annual Expedition Mt Kinabalu that was flagged off by state Tourism, Culture and Environment Minister Datuk Jafry Ariffin at a hotel here on Saturday (July 23).
Jayasuriya, who lives in California but grew up in Kota Kinabalu, led her climbers after a two-year break imposed by the Covid-19 pandemic.
She has brought over 750 climbers to Sabah to raise funds and awareness for Duchenne muscular dystrophy.
“Dusty is my daily inspiration and he inspires everyone he knows as he overcomes personal adversity with a smile on his face – I climb for him,” she said.
Besides Expedition Mt Kinabalu, another mountain excursion happening almost simultaneously to raise awareness for Duchenne was being led in Pakistan by three-time Malaysian Everest summiteer Ravichandran Tharumalingam, who is also known as Ravi Everest.
Dusty and the challenges faced by people with Duchenne have inspired Ravi Everest, Coalition Duchenne’s official climbing partner, to become involved with the cause.
“I’m inspired by the determination of boys and young men with Duchenne like Dusty,” said Ravi Everest in a statement.
Jayasuriya, who is also a filmmaker, said there have been significant advances in treatments for Duchenne since Dusty’s diagnosis.
She said gene therapies hold great promise and trials were being conducted in the United States and Japan.
A strong believer in acting locally but thinking globally, Jayasuriya is an advocate for Malaysian patients to have access to drugs for Duchenne currently being developed in the United States and Europe.
She has spoken at conferences and worked with pharmaceutical companies to set up trial sites.
“Boys and young men with Duchenne in this region need a voice and access to new drugs,” she said.
She added that finding and helping boys with Duchenne in Sabah like Azmi George (who passed away in 2018) has inspired her to expand assistance to local people afflicted with the disease.
She is exploring working with local groups and doctors to assist Duchenne patients in rural communities, as well as their families.
“When you pull up the most disadvantaged person, you pull up everyone,” she said.