SINGAPORE - Actor Chew Chor Meng already has great difficulty climbing stairs and he struggles to lift his four-year-old daughter. Soon, he may even lose his ability to walk.
But the 40-year-old, who broke the news that he has spinal and bulbar muscular atrophy, or Kennedy's disease, last Friday night, is refusing to let this debilitating disease strike him down.
'My doctor says my life is not in danger, but in the next five to 20 years, my condition will get worse and I may have to use a walking stick or a wheelchair,' he told reporters in Mandarin after giving a testimony in his church, Renewal Centre, in Serangoon.
'But whatever happens, even if I'm confined to a wheelchair, I still want to see my daughters grow up,' he said, breaking down.
Named after Dr William R. Kennedy, an American physician who was among the first to determine this genetic disease, Kennedy's disease is rare and currently incurable.
This progressive neuromuscular disorder inflicts one in 40,000 people worldwide, with symptoms usually appearing between the ages of 30 and 50.
Men tend to develop symptoms while women tend to be just carriers. It does not affect life expectancy.
Mr Chew, the father of two girls aged four and six, had kept quiet about his illness after he was diagnosed in September this year.
He told only a handful of close friends and even wanted to keep it from his bosses at TV station Media- Corp. But he changed his mind when he realised his deteriorating condition would make it hard for him to work.
One of the first he told was good friend, radio DJ Dennis Chew, 34.
He received a call from Mr Chew the day he was diagnosed and remembered the actor sounding quite 'down and depressed' over the phone. 'He told me his illness is incurable. I was very, very sad. I thought, why would something like this happen to him?' he told The Sunday Times yesterday.
The radio DJ was also asked to keep it a secret, but Mr Chew's slow gait was becoming increasingly obvious to those around him.
The actor's wife, Deon, 34, told Chinese evening daily Lianhe Wanbao last Friday that she is already prepared for the worst.
'I told him, if it is hard on him, then don't work,' she said.
'People think he is being anti-social because he often doesn't eat with his colleagues. But that's because he can't even walk the short distance to the canteen, and always needs someone to get him packed lunch.'
Mr Dennis Chew, too, said the Don't Worry Be Happy star's illness has not gone unnoticed.
'Some people ask me, 'is Chor Meng unwell?' I just say, 'back problem',' he said.
Mr Chew has been suffering from back pain since he hurt it while filming a drama series in 1997. He had gone to a slew of doctors and Chinese physicians since, but with little result. At one point, he even thought he had suffered a stroke.
In some ways, he is glad that the mystery of his backaches has finally been solved, he said.
But he found it hard to accept at the beginning.
'I felt scared thinking about my future. And I was worried about how my family would be affected if the news leaked,' said Mr Chew, who won the talent contest Star Search in 1990 and has consistently been on MediaCorp's list of top 10 popular actors.
He wanted to break the news on MediaCorp's award show, Star Awards, next year. 'But I know I can't keep such things secret. When I went out recently, some people had come up to me to ask what was wrong with my legs.
'I know, as an actor, if I can let more people know about this disease, that's a good thing. But I also hope to keep a patient's last dignity.'
His mother, especially, has not taken to the news too well. She sits in the living room and cries, blaming herself for passing on bad genes to him, he said.
She lives with him and his family in a three-storey townhouse in Hougang.
Religion is keeping him going during this difficult time. Mr Dennis Chew said his friend recently became a Christian - something that made Mr Chew's wife extremely happy. She has been a Christian since they were married in 2000.
Mr Dennis Chew and a few other close friends, including artistes Zoe Tay, Aileen Tan, Ivy Lee, Li Nanxing, Kym Ng, Chen Liping and Rayson Tan recently attended the baptism of the actor and his two daughters.
At that time, Mr Chew could not join his wife on stage because he had difficulty climbing up the stairs.
Mr Chew himself said that since becoming a Christian, he has become more calm and has given up swearing. He does not blame anyone for his fate.
'I'll try my best and let God do the rest.'
Mr Dennis Chew said of his friend, whom he calls 'Ah Hia' (older brother in Teochew): 'He has been very strong and he doesn't let his illness get him down, or get angry because of it.'
But he worries most about seeing Mr Chew's condition deteriorate.
'I really want to see him get better. He hasn't been as gui ling jing guai (Mandarin for mischievous) recently. I hope he will get his energy back.'
Mr Chew himself seems to be taking it in his stride.
'I told my mum, 'when the time comes, buy me a nicer wheelchair',' he said.
This article was first published in The Straits Times on Dec 21, 2008.