By South China Morning Post | Created at 2024-11-16 08:31:29 | Updated at 2024-11-23 05:19:42
6 days ago
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.
