Not giving in to muscle disease without a fight

SINGAPORE: In the next few years, emcee and radio personality Joe Augustins 16-year-old son Jordan may require ventilator support to help him breathe. Jordan was diagnosed with Duchenne Muscular Dystrophy (DMD) just before he started Primary One.

Affecting one in 3,000 boys, DMD is a progressive, genetic muscle disease that causes the muscles to weaken over time.

We were initially devastated by the diagnosis because everything we read on the Internet about the condition was so damning, said Jordans mother, Mrs Adele Augustin, 43.

Dr Wendy Liew, consultant at Neurology Service, Department of Paediatrics at KK Womens and Childrens Hospital (KKH), said patients will have a shortened lifespan and delayed motor milestones as a result of muscle weakness. There is currently no cure for the disease.

By 12 years of age, many of them would require a wheelchair to help them move around.

While steroid treatment can help to maintain muscle strength and delay the need for a wheelchair by one to three years, many patients would still require ventilator support to help them breathe in their late teenage years, said Associate Professor Stacey Tay, head of the Division of Paediatric Neurology at National University Hospital.

Later, death usually occurs from infections, heart rhythm problems or heart failure.

Over the years, Jordans parents have witnessed his muscle strength deteriorating gradually. He currently moves around in a wheelchair, and requires assistance to shower and use the toilet. His handwriting has also deteriorated in recent years, said Mrs Augustin, who uses a hoist to help Jordan in and out of the family car.

Yet, the optimistic couple, who also have three daughters aged 19, 14 and 10, are not giving up without a fight. We dont talk about DMD being a fatal condition and Jordan doesnt consider it something he is going to die from. For us, a diagnosis is not the end. It is simply a start of another journey, said Mr Augustin, 46.

Although the Augustins are aware that boys have died from complications resulting from the disease, they have not made any end-of-life plans. Our approach has never been about that, said Mr Augustin.

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Not giving in to muscle disease without a fight