Cheuk Ka, a child with spinal muscular atrophy, is joined by her mother (centre) and Families of SMA Foundation founder Fok Mei-ling. - Photo: Cindy Sui
HONG KONG: Eight-year-old Cheuk Ka’s world is a studio flat in Hong Kong that she shares with her mother, younger sister and the family’s domestic helper.
Born with spinal muscular atrophy (SMA), a genetic neuromuscular disorder that causes muscle weakness and loss of movement, she has been bedridden her whole life and breathes using a ventilator.
While she cannot go outside to play or attend school, the Families of SMA Foundation has worked to relieve her hardship and that of many other patients.
The NGO, which was established in 1998, provides life-saving medical equipment to families that struggle to afford such devices.
They also provide free home visits by intensive care unit (ICU) nurses, physiotherapists and other specialists to check on patients and train families to properly use mechanical ventilators, mucus suction machines and other respiratory equipment.
“It’s a lot of help ... They tell me how to take good care of her,” said Cheuk’s mother, who asked not to be named.
“It avoids her having to go to the hospital, which puts her at risk of getting infectious diseases. ... Every time we have to take her to hospital, it’s like moving [house] because we have to take so much equipment with us.”
Operation Santa Claus (OSC), an annual fundraising initiative organised by the South China Morning Post and public broadcaster RTHK since 1988, has decided this year to help fund the foundation’s work.
The foundation said the funding injection would ensure it could provide much-needed services to 21 beneficiaries and to expand its scope to ventilator-using patients with other rare diseases, meaning it could support 35 people next year.
The group’s “Breathe Well” project stems from a pilot scheme launched in 2021 during the Covid-19 pandemic, when SMA families were concerned about their child getting infected during trips to hospital.
Fok Mei-ling, the charity’s founder and chairwoman, said it decided to continue the programme after it proved successful in reducing hospital admissions among SMA patients.
“Admissions to hospitals is a lose-lose [situation] for everyone. It’s a lose for the family because they don’t want their kid to be in hospital and get some hospital infection,” she said.
“It’s a lose for the government because ... these patients are usually high-dependency unit patients, so they go into ICU, which will be very costly for the government. ... If they go into ICU, they don’t just go overnight. They sometimes stay for months.”
Fok said she hoped the government would eventually take over the programme, which addresses the under-served field of in-home care.
“That’s my strategy. Instead of always asking the government to start something, why don’t I start it first, because time is of the essence. They’re fragile and they’re a sector of the community we should take care of,” she said.
Fok said she understood the plight of SMA families as her son was born with the disease.
She recalled doctors telling her: “You’re still young, why don’t you consider having another child? This one may not live past his first birthday ... [Even if he does,] he’s not able to breathe, he’s not able to eat, he’s not able to move. What’s the point?’”
“They forget that parents, out of love, can’t just give up so easily because SMA children are all cognitively normal. ... Many of them are very smart,” she said.
In Hong Kong, there are about 100 people with the rare disease.
Fok noted that there were cases of people with the condition going on to live full lives, such as long-time beneficiary Josy Chow Pui-shan, who is studying for a master’s degree in English literature at the University of Hong Kong despite being nearly completely paralysed.
She cited the success of boccia player Ho Yuen-kei, who has gone on to win two gold medals at the 2024 Summer Paralympics in Paris.
“SMA may not be fatal ... It’s manageable. Don’t just give up on SMA kids. Encourage good management so they can live and will not just die,” Fok said.
She also spoken about her own son, who is now 33 years old, saying: “I’m so happy every day to see him. He’s the joy of my life.”
Fok’s charity also arranges emergency home helpers and dim sum gatherings to help relieve the stress on carers.
In the case of Cheuk, her mother said it was reassuring to have someone she could call for help.
The divorcee, who quit her job to care for her daughter, said it was comforting knowing that “it’s not just me alone on this path”.
OSC has raised HK$383 million (US$49 million) to support the Hong Kong community through 353 charitable projects since 1988. This year, 11 charitable projects are set to receive funds from the initiative. - South China Morning Post
