Coalition Duchenne back for 11th charity climb, funds RM20,000 for rare disease


KOTA KINABALU: International charity group, Coalition Duchenne, is donating RM20,000 to the Sabah Women and Children’s Hospital in Likas here as they returned for the 11th annual Mount Kinabalu expedition.

In a statement here on Friday (June 2), the charity said the fund would go towards helping boys with Duchenne muscular dystrophy - a common rare childhood disease - which is present in 1 in 3,500 male births.

Spaces are still available for the climb set to take place from June 10 to 12, where state Tourism, Culture and Environment Minister Datuk Christina Liew is expected to flag-off from Shangri-La Tanjung Aru Resort here.

The annual event has brought together climbers from around the world to raise awareness on Duchenne disease, including people who have a family member with the disease, and others who are new to the cause, according to the charity.

This year’s climb will also be partly led by four-time Everest conqueror Ravichandran Tharumalingam, also known as “Ravi Everest,” they said in the statement.

Duchenne is a progressive muscle-wasting disease where muscle cells weaken and lose their functionality.

Those suffering from this tend to fall often and fatigue quickly around the age of six or seven, with early signs of difficulty in walking, running, and climbing, and by the age of 10 to 12, most boys are in a wheelchair.

Coalition Duchenne founder Catherine Jayasuriya has been working with consultant paediatric neurologist Dr Heng Hock Sin and physiotherapist Vivienne Yong on various initiatives aimed at helping boys with Duchenne, especially in rural areas of Sabah.

Jayasuriya who grew up in Kota Kinabalu, has always dreamed of taking her children to the summit of Mount Kinabalu, however, her son Dusty Brandom, has Duchenne and would never make the climb.

Today at age 30, Dusty, who is in a wheelchair and severely impacted by the muscle wasting disease, is very involved in the behind-the-scenes organisation of the expedition.

For more information about Coalition Duchenne, the public can visit http://www.coalitionduchenne.org.

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