Former barrister Fok Mei-ling has an impish, cheerful face with eyes filled with wonder - not what you might expect in a mother with a child with severe physical disabilities.
Given the care her son Howard, who has the most severe form of the debilitating disease spinal muscular atrophy (SMA), requires, it seems inconceivable Fok would have the energy to fulfil her role as chairman of the Families of SMA Charitable Trust, an organization she founded when her son began to "stabilise" in 1997. Howard, 11 was diagnosed at two months old as suffering from SMA, which is the biggest genetic killer of children less than two years old. He is mentally alert, but cannot breathe, move or speak unassited. "It seemed like something I ought to do, otherwise I would be very selfish, " says Fok. Now there are 70 SMA Trust families in Hong Kong. Fok is also lobbying hard to win children on ventilators access to mainstream special schooling, having succeeded in winning places for Howard and a 15-year-old boy two years ago.
"Despite the fact Chief Executive Tung Chee-hwa has made education for young people an important issue, the education system in Hong Kong is not equipped to admit students on ventilation. This is owing to an unfounded fear of the machinery involved, a fear of liability and the result of a lack of resources," she says.
Fok and her husband, a doctor, are fortunate in that they can afford to send Howard to school: a driver takes him there and back, and two domestic helpers assist him in the classroom. He attends school three days a week, and has not been absent in two years. Thanks to the support of his teachers, and computer software he has mastered (he manipulates a mouse with tiny movements of his right toe), Howard can now speak English and Cantonese and no longer relies on a 26-letter phonetic alphabet of combinations of the few noises he is able to make, which served as his only means of communication until two years ago.
When we meet, Fok announces she has formed a new seed group called the Parents' Group for Ventilator-Assisted Children. Of its seven members, three are parents with children who attend the Duchess of Kent's Centre for Tertiary Rehabilitation of Ventilator-Assisted Children, Pokfulam, which she lobbied to establish with Christine Loh. "It's helping the children integrate with society. It provides education to help parents cope with them at home, and slowly discharges them from the hospital to home, rather than keeping them in institutions all the time," she says.
Fok is also an executive committee member of the Society for the Relief of Disabled Children, a member of the Hospital Governing Committee of the Duchess of Kent Children's Hospital, Sandy Bay, and recently helped organise an international satellite symposium on neuro-muscular diseases. I'm not keen to collect these titles, it means nothing to me really, but it serves as a platform to be an advocate or make representations, because if you are just a nobody housewife nobody will listen to you. It's the way the world works," she says.
"I've always harboured a love of disabled children, maybe that's why God give me one," she says. "And I guess I like to make what seems a bad story into a good one."
Fok has no regrets about giving up her job as a senior lawyer as soon as Howard was diagnosed in 1991, because she is able to use her professional skills to lobby on behalf of other parents. "I'm able to do what I really want to do - and find meaning to it - and that's why I'm living a happier life, " she says, "Many people are not happy because they're trapped in things they don't want to do. You could ask: would I prefer a son who is a normal child? After 11 years with Howard I would say no, I like Howard just the way he is. "
- South China Morning Post Magazine (January 12, 2003)