SINGAPORE — In the next few years, emcee and radio personality Joe Augustin’s 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 Jordan’s mother, Mrs Adele Augustin, 43.

Dr Wendy Liew, consultant at Neurology Service, Department of Paediatrics at KK Women’s and Children’s 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, Jordan’s 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 don’t talk about DMD being a fatal condition and Jordan doesn’t 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.

Instead, they are focused on preserving as much of Jordan’s muscle strength with more aggressive steroid treatment and physiotherapy. They are also biding their time for a potential cure.

Mrs Augustin said: “Our doctor has kept us updated on medical developments that are happening overseas. At the moment, we’re focusing on having enough funds. Hopefully when there is a clinical trial for a new therapy, we’ll be able to afford to be in the programme.”

Assoc Prof Tay said a novel gene therapy for certain groups of DMD patients is in the pipeline. Currently in the clinical trial stage, the gene therapy could potentially pave the way for similar tailor-made treatments.

In the meantime, Jordan still has schoolwork to do as well as life’s challenges and joys to experience, his parents quipped.

Mr Augustin feels it is important to engage Jordan “like he is not disadvantaged and he is as capable of doing what boys without DMD would do”.

“You can be sure that his mum will get on his case if he’s behind in his schoolwork,” he said with a laugh.