Mum of kid with Duchenne shares double heartbreak

by Jenne Lajiun. Posted on August 25, 2012, Saturday

Tham and her son, Edmund, at the event. Tham is climbing Mount Kinabalu for the first time to help raise awareness on Duchnenne.

KOTA KINABALU: Parents with children afflicted by Duchenne muscular dystrophy may only have one simple wish that treatment would enable their children to outlive them.

But sadly, this disease has stoppably robbed them of their beloved children too early during their lifetime, more often than not in their teens.

Tham Chew Yen, 28, shared her wish for treatment to be made available to her six years old son, Edmund Wong, who was diagnosed with the disease when he was two years old.

Having experienced the loss of her eldest brother to a similar condition 19 years ago, she knows all too well the pain one has to endure in the face of such adversity.

I wish for a miracle and a cure. I saw what Duchenne did to my brother and it was very difficult to accept his passing because we were so close, Tham said.

He died when he was 13 years old. We were very close and so when he died, I felt a knife thrusted into my heart. I still feel the pain now each time I think of him, she said.

And as if the pain of losing a brother wasnt enough she now faces a similar predicament with her first born child.

When I found out he has contracted the disease, I locked myself up for three whole months, not talking to anyone, not wanting to meet anybody. But I later realised that I need to be strong for my son. If I am weak, who would be strong for him? He needed me to be strong, she said.

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Mum of kid with Duchenne shares double heartbreak