At 26, Miss Goh Puay Hwoon has taught herself to do business online, and has just set up an e-shop selling clothing and jewellery. She has spent her life learning to do things on her own.

As a child, she picked up reading and writing in both English and Chinese, although her family spoke only Mandarin and she did not spend a day in school.

A lifetime of hospital stays and being confined to her bed meant that she had to.

Puay Hwoon suffers from a neuromuscular disease called spinal muscular atrophy. Her muscles have wasted away because the nerves controlling them do not work properly.

She used to be able to sit on her own, but not for the last seven years as her condition took its toll.

Life-threatening chest infections are a constant worry.

Tipping the scales at 20kg, she is now too weak to lift her head, even on a good day. But her voice is spirited and her eyes shine with intelligence.

“I cannot go out, I cannot do a lot of things,” she said. “But I have a lot of friends, and I’m setting up a business.”

Mousepad resting on her stomach as she lies immobile, the world is just a click away. She chooses stocks, collects payments and gets deliveries done – all from her bed. She has two sites – vgfashionhouse.blogspot.com or vgprettyhouse.blogspot.com for second-hand products – and already a handful of customers in the month since she set them up.

Then there are suppliers to talk to, pen-pals in Taiwan, online games and chats and virtual pets to take care of.

There are Hong Kong and Taiwan television dramas to watch, newspaper to read, and music by her heartthrob Andy Lau. And there’s her Barbie doll collection to enjoy- one wall of her bed room in her three-room flat in the east is packed floor to ceiling with over 40 of them.

When her hand gets too tried manoeuvring the mouse, her mother, Madam Ivy Yong, takes over.

“She taught me how to use the Internet,” said the cheerful 52-year-old, who is never far from her daughter’s side.

Madam Yong’s sister brings food over and groceries are brought online. Mother and daughter never leave the house, except to go to the hospital.

But Madam Yong, a divorce who quit work 10 years ago to take care of her daughter, is full of laughter. At the National University Hospital, where the pair are like family members to the paediatric doctors and nurses who have treated Puay Hwoon for decades, she counsels other parents.

“I tell them, you need to accept what’s handed to you, and you’ve got to be optimistic or it won’t do your children any good,” she said in Mandarin.

Chest infection and stays in the intensive-care unit aside, hospital visits are a must every three months, for Puay Hwoon to change her feeding tube.

Since she is no longer able to swallow, her only food for the past three years has been milk, fed directly to her stomach through a tube.

Each night’s sleep lasts no longer than four or five hours for mother and daughter, as Madam Yong has to feed her seven times a day.

Madam Yong sleeps on a mattress beside her daughter’s bed, helps her with a bed pan and carries an inflatable child’s pool onto the bed to bathe her.

The pint-size woman does physiotherapy exercises on her daughter several times a day, and even carries her in her arms when necessary.

Money-wise, they are supported by Puay Hwoon’s brother, 30, a computer technician, and helped by individuals and organizations that donate money, medicine and equipment, such as her breathing device.

Said Puay Hwoon: “I’d really like to thank all the people who have helped me.”

There is much to be thankful for, she said.

“I have so many friends, more than a hundred. Doctors, medical students, friends from church.”

They crowd into the flat for her birthday party every year, armed with a fancy cake in the shape of a doll, which she likes to look at, even though she can’t take a slice. “I never liked to eat, I don’t miss food,” she said.

For her next birthday, she already has three wishes: “To keep healthy, and to see my business take off.

“And to see Andy Lau in person.”

The Straits Times
October 11, 2006

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