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Heart-wrenching tale from dad whose son is dying

George...Azmi’s dad

17th July, 2017


KOTA KINABALU: For 49-year-old George Tangilan, his only wish is to seek a cure for his 19-year-old son, who is terminally ill.

He knows his wish may never be granted, but he knows there is hope that his son, Azmi George, will get to live longer and will have his happy moments.

He is not giving up in his support for his son, who is suffering Duchenne muscular dystrophy.

“I have no words to say how much he (Azmi) has suffered but I intend to see through that his wish of visiting Petronas Twin Tower is fulfilled,” said George, a lorry driver from Kiulu.

At the age of 10, Azmi was diagnosed to have the dreaded disease. “At first we do not know about the disease, our son can’t walk or move his body and he has to stop to schooling by Primary 3.

“When we brought Azmi to the doctors, they could not answer us. An extensive diagnosis was done before we were informed that it is Duchenne muscular dystrophy,” said George when met at the flag off of the seventh annual Expedition Mt. Kinabalu in support of Coalition Duchenne.

The expedition is participated by 14 climbers from all around the world.

The father of six said he is thankful to Coalition Duchenne for their support towards their son and family.

Coalition Duchenee founder Catherine Jayasuriya, had always dream of taking her children to the summit of Mount Kinbabalu but her son Dusty Brandom, has Duchenne and would never make the climb. Dusty, 24, is in a wheelchair and is severely impacted by the muscle wasting disease.

Duchenne Without Borders (DWB) is the new initiative launched to help families and boys all around the world who Duchenne disease, she said.

Catherine said, Coalition Duchenne is a movement to raise awareness for Duchenne muscular dystrophy and to fund research on a cure one day.

Duchenne is a progressive muscle wasting condition that affects one in 3,500 boys and young men worldwide. This fatal disease affects every muscle in the body including the heart muscle and the muscle that make breathing possible.

The symptoms of this muscular disorder usually begin around the age of four and the condition deteriorates quickly. A Duchenne sufferer will undergo muscle loss in the upper legs and pelvis followed by the upper arms, which normally results in having trouble standing up and later even walking.

Catherine said that the DWB has already reached out to 13 boys in Borneo including Azmi.

“We have provided information about Duchene to doctors and families in those areas and hope to distribute Ambu (Artificial Manual Breathing Unit) baga and bipap machines to the sufferers,” she said. Also present was Sabah Park Chairman Dato’ Seri Tengku Dr Zainal Adlin.

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