I couldn't have done it without Mum

I couldn't have done it without Mum

By Veena Bharwani

HE HAS a degenerative disease that doctors said would not let him live past the age of 17.

Weighing only 30kg, he cannot dress, bathe or feed himself, and needs a machine to help him breathe.

But Kevin Lee, now 20, is a determined young man.

Not only will he graduate on Tuesday with a diploma in Internet and multimedia development, he has already been working from home as a games moderator for a software company, earning $800 a month.

He works about six hours a day.

Recognising the double act, Temasek Polytechnic (TP) will have both mother and son on the stage to receive his diploma.

Madam Tay, 52, is no stranger to TP as she has been taking her son to his classes for the past three years.

She helped him turn the pages of his books during lessons and also carried him from his wheelchair to the lecture hall.

Said Kevin on the role his mother played in his success: 'I couldn't have done it without her. She has been by my side all my life.'

He was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of 10.

DMD is a severe form of muscular dystrophy characterised by rapid muscle degeneration, eventually leading to loss of movement and death.

At the time, the family was told that he would not have many more years to live.

While she was heartbroken when she first heard the news, Madam Tay vowed to help her son fulfil his dreams.

'I wanted him to achieve as much as he can, despite his handicap,' she said in Mandarin, through a translator.

She is with him all the time. At night, she sleeps beside him and shifts his position several times to ensure he doesn't choke on his saliva.

Joker

Despite his condition, Kevin still finds ways to make his mother laugh. A teary Madam Tay said: 'He is a real joker. I've put on some weight recently. So he tells me, 'Ma, you don't need to buy a hula hoop, you have one on your tummy!' '

She quit her $1,000-a-month job at a manufacturing plant when Kevin was diagnosed with the disease.

Her daughter Lee Pei Yi, 15, is in Secondary 3. Her husband Lee Siew Kan, 53, works as a salesman to support the family.

Said lecturer N Vijayan of Madam Tay's commitment: 'She's never far away from him. Even during tutorials, she might walk out for a while, but she will come in and check on him always.'

Regarding Kevin's job at AsiaSoft Online's Playpark forum, she said: 'I have to watch him on the computer and make sure he is okay and doesn't strain himself.'

Madam Tay readily acknowledges the part played by TP in helping Kevin.

He was given extra time to complete assessments. He was also provided with a room and bed in the sick bay area to rest between classes as he would get tired easily during the day.

Since he has been unable to write for the past two years, the polytechnic arranged for a writer to write down Kevin's dictated answers during examinations.

As a Mother's Day present, he spent $500 on a Nintendo Wii game console for her.

Said Kevin: 'I just want to make her happy - she has done so much for me.'

Over the past two years, his condition has deteriorated considerably.

Said Madam Tay: 'Now he has only milk for breakfast. He has biscuits for a snack. He can't swallow anymore. He only has dinner.'

He uses the Bipap - bi-level positive airway pressure - a device that helps him breathe.

Despite the banter, one can sense her fear.

Most who suffer from DMD do not live beyond early adulthood.

She said: 'I keep myself busy so I don't think of what is going to happen to him.'

She added: 'He tells me to spend more time with my daughter as he is worried I pay too much attention to him.

'He also tells me not to be too sad when he goes.'

But now they are planning his 21st birthday in July.

'He wants a big celebration with all his friends and that's what I'm going to give him,' Madam Tay said, wiping away tears.

This article was first published in The New Paper.