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SINGAPORE - It took Madam Lim Sock Leng and her husband almost a full year to accept that their second son had a fatal genetic disorder.
At the age of five, Mr Timothy Chan was diagnosed with Duchenne muscular dystrophy - which causes progressive muscle deterioration and loss - after his parents noticed that he kept falling over.
Life expectancy for those with the condition varies - some die in their teens, others make it to their early 30s.
The rare disorder is diagnosed in about one in 3,500 male births worldwide.
Madam Lim, who had two other sons and a daughter by the time Mr Chan was diagnosed, said: "We wrote to a doctor in the United States and he was very kind to write back to me to confirm that the condition is incurable; but he said they were doing a lot of research on it and to not lose hope.
"We've waited almost 30 years now, there's still no cure for muscular dystrophy."
Still, the 61-year-old human resources and regulatory director at M1 and her husband resolved to raise their son as normally as possible without mentioning that his condition is fatal.
They enrolled Mr Chan in mainstream schools and let him walk for as long as possible - he had to use a wheelchair by the time he entered secondary school.
While Mr Chan, who turns 32 in August, was upset to learn that his life would be cut short, he told The Straits Times that his parents helped him deal with the challenges of his condition.
He said: "Initially, it was quite tough (to get weaker) because obviously I wanted to do everything else my peers were doing, and I felt very ashamed when people saw that I couldn't walk properly or had to use a wheelchair."
"But what has helped me is the way my mum and dad raised me. They've always tried to let me do everything that my siblings could do, even encouraging me to pursue my interests in things like design and chess."
Undeterred by his poor results at the A levels, Mr Chan pursued design at Ngee Ann Polytechnic after a gap year and enrolled in Nanyang Technological University, where he graduated with a degree in product design with honours.
But being unable to move his arms without a helper made it hard to work and he had to quit his job at a robotics maintenance company.
More at https://www.straitstimes.com/singapore/parenting-education/turning-32-with-a-fatal-genetic-disorder
At the age of five, Mr Timothy Chan was diagnosed with Duchenne muscular dystrophy - which causes progressive muscle deterioration and loss - after his parents noticed that he kept falling over.
Life expectancy for those with the condition varies - some die in their teens, others make it to their early 30s.
The rare disorder is diagnosed in about one in 3,500 male births worldwide.
Madam Lim, who had two other sons and a daughter by the time Mr Chan was diagnosed, said: "We wrote to a doctor in the United States and he was very kind to write back to me to confirm that the condition is incurable; but he said they were doing a lot of research on it and to not lose hope.
"We've waited almost 30 years now, there's still no cure for muscular dystrophy."
Still, the 61-year-old human resources and regulatory director at M1 and her husband resolved to raise their son as normally as possible without mentioning that his condition is fatal.
They enrolled Mr Chan in mainstream schools and let him walk for as long as possible - he had to use a wheelchair by the time he entered secondary school.
While Mr Chan, who turns 32 in August, was upset to learn that his life would be cut short, he told The Straits Times that his parents helped him deal with the challenges of his condition.
He said: "Initially, it was quite tough (to get weaker) because obviously I wanted to do everything else my peers were doing, and I felt very ashamed when people saw that I couldn't walk properly or had to use a wheelchair."
"But what has helped me is the way my mum and dad raised me. They've always tried to let me do everything that my siblings could do, even encouraging me to pursue my interests in things like design and chess."
Undeterred by his poor results at the A levels, Mr Chan pursued design at Ngee Ann Polytechnic after a gap year and enrolled in Nanyang Technological University, where he graduated with a degree in product design with honours.
But being unable to move his arms without a helper made it hard to work and he had to quit his job at a robotics maintenance company.
More at https://www.straitstimes.com/singapore/parenting-education/turning-32-with-a-fatal-genetic-disorder
