Patients with weak muscles to get new wheelchair-friendly car
When Fok Tan Mei-ling's son was diagnosed a few months after birth with an acute neuromuscular disease, she learned that he would not survive and there were no other families to turn to for guidance.
Two decades later, Fok's son is in his 20s and she has spearheaded the development of the Families of SMA Charitable Trust, an organisation dedicated to helping families cope with spinal muscular atrophy (SMA).
'My son survived,' she said. 'I set up this charity because I want to help patients and their families. I went through it; I know how difficult it is and what help they need.'
SMA is a debilitating disease that affects muscles used in activities such as crawling, walking, swallowing and head and neck control. Patients may be unable to use their limbs independently or to feed themselves.
The trust was set up in 1998 and, in the 13 years since, has spent more than HK$6 million on easing problems faced by patients, from toddlers to young adults and their families.
As a beneficiary of Operation Santa Claus this year, the charity plans to buy a car adapted for the wheelchair-bound so it can continue ferrying the severely disabled around. They now have a 10-year-old second-hand car.
The new car, a Japanese import, has safety features such as electronic ramps. All the wheelchair locks and safety belts are approved by both the Japanese and Hong Kong governments for disabled passengers.
Fok said the car could be used for at least a decade. 'It is essential for patients. Since they are severely disabled, they need to be able to take along medical equipment, such as a ventilator, when they go out,' she said. 'Having a car that allows us to take them to other parts of Hong Kong means a lot to their happiness.'
The charity, apart from buying expensive but necessary equipment, tries to meet individual needs by, for example, creating home offices for people who have the skills to work.
Some 70 Hongkongers have severe forms of the condition and form a tight-knit community. 'We are like a family,' the trust's executive secretary, Mary Yim, said. 'We know every one of our members and our members know every other member.'
OSC is an annual fund-raiser jointly organised by the South China Morning Post and RTHK.