Raising global awareness of Duchenne on Mt Kinabalu

The Star

a day ago

COALITION Duchenne's 13th annual Expedition Mt Kinabalu will start tomorrow from Shangri-La's Tanjung Aru Resort and Spa, with an official flag-off by Sabah Tourism, Culture and Environment Minister Datuk Christina Liew.
The annual climb continues to raise global awareness and funding for Duchenne muscular dystrophy, a progressive and fatal muscle-wasting condition that affects one in 3,500 boys worldwide. There is no cure.
Over the years, Coalition Duchenne, a Californian-based charity, has donated RM40,000 to the Sabah Women and Children's Hospital through the Sabah Paediatric Association to support Duchenne care.
This year, the charity took things further by collaborating with Sabah paediatric doctors and rehab therapists to host Malaysia's first Duchenne specific multidisciplinary workshop.
The workshop, conducted at Shangri-La's Tanjung Aru Resort, catered for over 100 participants, comprising doctors, educators, caregivers, parents and boys with Duchenne, some from across Sabah.
The workshop was a community outreach of the multidisciplinary clinic of Sabah Women and Children's Hospital and the Rehabilitation Medicine Department of Queen Elizabeth Hospital.
The participating doctors are part of the Sabah Paediatric Association, a professional body representing paediatricians in Sabah that advocates for the health and well-being of all children.
Benphysio, a Kuala Lumpur-based wellness and rehabilitation team, assisted with hands-on physiotherapy.
'Our dedicated clinic at Sabah Women and Children's Hospital cares for patients with Duchenne.
'It's all about patient-centred management,' said Sabah Women and Children's Hospital paediatric neurologist Dr Elyssa Majawit.
Members of a previous expedition team just below the summit.
For Catherine Jayasuriya, founder and executive director of Coalition Duchenne, helping boys with Duchenne in Sabah is deeply personal.
Her son, Dusty Brandom, is 32 and lives with the disease.
'After seeing the challenges one faces with Duchenne, I felt a strong need to contribute and help make a difference,' she said.
'Returning to Sabah allows me to support these children and their families directly, through awareness, resources and advocacy.
'It's not just about giving back – it's about creating real, lasting change where it's needed most.
'When you lift the most vulnerable, you lift up everyone,' she added.
Catherine is Sabahan and grew up in Kota Kinabalu and always dreamed of taking her three children to the top of Mt Kinabalu.
But after Dusty was diagnosed with Duchenne, her dream was no longer possible.
Now Dusty uses a wheelchair and ventilator and follows the expedition from their home in California.
'The annual climb started after a dream I had in 2010,' she said.
'When my son was younger, there was no treatment or cure in sight and I knew I had to do something.
'In my dream, a large group of people stood on the summit of Mt Kinabalu, all wearing red T-shirts with white lettering, united in purpose to raising awareness for Duchenne.
'I woke up and knew I had to make that vision a reality.'
Over the past 13 years, Catherine has found creative ways to spotlight Duchenne awareness.
In 2012, she brought a film crew to Sabah to produce the documentary Dusty's Trail: Summit of Borneo, telling Dusty's story and the story of the climb.
Her father, the late Tan Sri Thomas Jayasuriya, appeared in the film, along with family, friends, scientists and doctors.
She also brought the first-ever wingsuit flyers to Sabah, soaring over Mt Kinabalu in bright red suits emblazoned with the Coalition Duchenne logo.