KOTA KINABALU: A team of 85 people from 10 countries taking part in the Coalition Duchenne Third Mt Kinabalu Expedition was yesterday flagged off by Tourism, Culture and Environment Minister, Datuk Masidi Manjun.
The team was led by Coalition Duchenne founder and executive director, Catherine Jayasuriya, a Sabahan now residing in California.
The aim of the climb was to raise awareness for Duchenne Muscular Dystrophy as well as to raise a US$150,000 grant for a team of researchers at the Cedars-Sinai Medical Centre in Los Angeles, California led by Eduardo Marban MD, PhD to do a Pre-clinical Study using Cardiac-Derived Stem Cells in Duchenne Muscular Dystrophy.
The research has already begun and was expected to be completed by March, next year.
“Right now, the test is being carried out at lab level. The amount raised will go towards funding this research,” she said.
Presently, there is no cure for people suffering from the disease but Catherine is optimistic that things were going to change for the better.
“Who knows when, but we’re making advancement and improvements. Boys are receiving better care. Awareness has really helped make the disease interesting for researchers to study. It has garnered their attention. It wasn’t like that in the past,” she said.
In a nutshell, Duchenne Muscular Dystrophy is a progressive muscle wasting condition that affects one in 3,500 boys and young men worldwide.
“20,000 boys are born each year with Duchenne, more than 50 a day. It is the most common fatal genetic disease of childhood. 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 grandson. It can happen to your brother, and it can happen to your son. Duchenne affects us all. Duchenne destroys muscles and breaks our families’ heart,” she said in her speech.
She added that her fight against Duchenne muscular dystrophy was a personal one.
“My 20-year-old son Dusty has Duchenne. He is not strong enough any more to travel here from California,” she said.
In an interview with Catherine earlier, the Borneo Post was told that Dusty, who has been to Sabah to witness the first Mt Kinabalu expedition in 2011, was well and happy, although his condition has deteriorated further and he has grown weaker.
“He is an inspiration because he has overcome so many challenges. He has suffered from cardiac and pulmonary problems, which is not uncommon during xthe end stage of the disease, but we have it under control. We have the equipment we need to help,” she said.
When asked how she was coping, she replied that it was not always easy.
“I focus on the present. I don’t think of what’s ahead,” she said.
She also said that it was heart wrenching to think of families in the rural parts of Sabah who have a son suffering from the disease and not have the much needed facilities to aid them and their son.
And how does one detect the ailment? She explained that parents usually start noticing something amiss by the time their child turns six years old or younger.
“By six years old, they are weaker,” she said. Prior to reaching their teenage years, children with the disease are already wheelchair bound and affected by scoliosis.
Their life expectancy ranges from mid teenage years to the mid 20’s. “In many ways, ours is not the happiest of causes because young men with Duchenne face a tragic end and we lose them when their minds are still full of dreams,” she said.