KOTA KINABALU: There has been a breakthrough in recent weeks in gene therapy to cure the rare disease of Duchenne muscular dystrophy (DMD), which primarily affects boys.
This came as a great relief and joy for Catherine Jayasuriya, a Sabahan who lives in California, United States, who has a son afflicted by the ailment.
She has been trying to get access to new drugs being developed in the US and Europe for DMD patients in Malaysia.
Catherine, a filmmaker and philanthropist, is also providing information on treatment options and coordinating with Malaysian charities such as the Rare Disease Malaysia.
When talking about her 29-year-old son Dusty Brandom, who is severely impacted by the muscle wasting disease, she said: "Dusty is my daily inspiration and he inspires every one to overcome personal adversity with a smile on his face.
"I am climbing today for him," she said today when referring to the '10th Annual Expedition of Mount Kinabalu' organised by Coalition Duchenne, a charity funded by Catherine.
About 20 climbers from Malaysia, the Philippines, India, United Kingdom, US and the Netherlands took part in the expedition.
Sabah Tourism, Culture and Environment Minister Datuk Jafry Ariffin, who was the event's VIP guest, said Catherine has chosen Sabah to be the focal point for her global efforts to raise awareness for Duchenne, which is a fatal, progressive muscle-wasting disease that affects one in every 3,500 boys worldwide.
"We are excited that one drug company, PTC Therapeutics, had started to conduct an investigative drug trial (related to Duchenne) at both Kuala Lumpur at Universiti Malaya Medical Centre and Kuala Lumpur Hospital.
"This is a great validation of the quality of medical facilities and people that we have here in Malaysia," said Jafry.
He also said that since 2011, the expedition in Kinabalu has brought more than 750 climbers here to raise awareness for Duchenne muscular dystrophy.
He said Catherine's advocacy for awareness about the illness has also received worldwide attention.
He said in Sabah, the entity, Duchenne Without Borders is working with local doctors to distribute medical equipment that will help Duchenbe sufferers.
Dusty's struggles and the challenges faced by people with Duchenne have also inspired three-time Malaysian Everest summiteer Ravichandran Tharumalingam to become involved with the cause. He is Coalition Duchenne's official climbing partner.
Catherine's cousin Yohan Jayasuriya, will also be attempting to reach the summit of Mount Kinabalu wearing a super hero costume.
Yohan, who works as an announcer and cosplay enthusiast, said he is making a second attempt at scaling the peak in costume to qualify for the Malaysia Book of Records after an unsuccessful bid in 2020 due to bad weather.
"I will be wearing a 3kg costume made from polystyrene foam starting from Timpohon gate to the summit and back.
"I am required to record the whole journey including the steps and distance via an application in my handphone," said Yohan who had already climbed the mountain 12 times before.