Vivienne Yong and Dr Heng Hock Sin.
KOTA KINABALU: Coalition Duchenne, a global charity that raises awareness and funding for Duchenne muscular dystrophy, is holding its seventh annual Expedition Mt Kinabalu in Sabah on July 15-17.
The climb is part of a busy year of initiatives in Southeast Asia helping boys and young men with pulmonary issues associated with Duchenne and ensuring access to new drugs that are being developed for the disease.
Expedition Mt Kinabalu is led by Sabahan Catherine Jayasuriya, the founder and executive director of Coalition Duchenne. Catherine grew up in Kota Kinabalu, and always dreamed of taking her children to the summit of its sentinel mountain.
Her son, Dusty Brandom, has Duchenne and would never make the climb. At 24, Dusty is in a wheelchair and is severely impacted by the muscle wasting disease.
“Their bodies fail them but their minds are full of dreams,” said Catherine.
“Dusty is my daily inspiration and he inspires everyone he knows as he overcomes personal adversity with a smile on his face. I’m climbing for him.”
An old proverb says: “We don’t inherit the world from our ancestors, we borrow it from our children”.
“That is why we climb Mt Kinabalu — we are making the world a better
place for our children, in our communities wherever that may be, and today, for boys and young men with Duchenne.”
Catherine recently launched Duchenne Without Borders, which supports underserved families and boys with Duchenne. Duchenne Without Borders has already reached out to 13 boys with Duchenne in Sabah and provided them with Ambu bags. Information about Duchenne has been provided to doctors and families in these areas.
The vision of Duchenne Without Borders is to distribute Ambu bags and bipap machines to boys with Duchenne in communities around the world, and give them hope and a connection to treatment protocols, drugs, and research initiatives that are readily available in the United States and other developed countries.
The main tool is a simple technology, an Ambu bag (Artificial Manual Breathing Unit or manual resuscitator or “self-inflating bag”), which has the potential to improve pulmonary function in boys and young men with Duchenne through a breath stacking exercise.
Duchenne Without Borders is moving quickly to develop relationships and expand this initiative to other countries, and is moving forward with collaborations in India and the Philippines.
“Duchenne knows no boundaries, and does not discriminate between race, culture, or country. Duchenne can happen to your friend, to your cousin, to your nephew, your three grandsons. It can happen to your brother, and it can happen to your child. In this way, Duchenne affects us all,” said Catherine.
In Sabah, Duchenne Without Borders is collaborating with Dr.Heng Hock Sin, a pediatric neurologist at Sabah Women’s and Children’s Hospital in Kota Kinabalu. Vivienne Yong of Move Well Physiotherapy is helping with coordination efforts.
Dr Heng sees over a dozen boys with Duchenne, several of who are in remote rural areas. One family has three sons with Duchenne.
Catherine recently presented at the 2017 World Orphan Drug Congress in Singapore. She advocated for Asian patients to have access to drugs being developed in the US and Europe.
“Boys and young men with Duchenne in this region need a voice and access to new drugs,” said Catherine.
Expedition Mt Kinabalu was featured in Catherine’s award winning film Dusty’s Trail: Summit of Borneo (2013). The film is the story of Dusty’s journey with Duchenne, and it tells about people coming together from around the world to climb Mt Kinabalu to raise awareness. Dusty’s Trail has an important message of hope in the face of adversity, and also spreads the word about the beauty of Sabah and its people.
“In 2011 we met then President Barack Obama in the White House and told him of our climb and Mt Kinabalu. Today I still hear from climbers who see the pictures of Dusty with President Obama on the noticeboard of the Laban Rata resthouse near the summit,” said Catherine.
“I was very inspired when I met the President, not only did he encourage me to keep going and to never quit, but he also recognized the resilience in Dusty, his courage and hope in the face of difficulty and adversity. I see the courage and resilience in all boys with Duchenne. Climbing the mountain tests our resilience, and it is the boys I think of when the going gets tough.”
Expedition Mt Kinabalu kicks off with a festive flag off at the Shangri-La Tanjung Aru Resort on July 15. That day there will be a free screening open to the public of Dusty’s Trail: Summit of Borneo in the Tanjung Room at Shangri-La’s Tanjung Aru Resort at 11am.
The event is hosted by Datuk Masidi Manjun, the Minister of Tourism, Culture and Environment.
Volunteers from the Inner Wheel Club of Kota Kinabalu will be registering climbers.