Operation Santa Claus: home help for little Abigail as she fights crippling disease
Charitable trust will provide rehabilitation service for parents of three-year-old now confined to hospital with rare condition
Little Abigail celebrated her third birthday last month with all the people closest to her. Her mum and dad came, of course, along with a fleet of nurses and a paediatric doctor.
Abigail has lived in the intensive care unit at Kwong Wah Hospital since she was first admitted two years ago. She breathes through a ventilator, eats through a tube and needs a suction device so she doesn't choke.
The young girl was diagnosed with spinal muscular atrophy (SMA) two years ago after her mother, Hilda Hui, noticed she slept strangely, her arms lying limp by her side. The rare disease afflicts around 70 Hongkongers, has no cure and is degenerative. It is also the most common genetic cause of infant death.
"The night we got the diagnosis I searched on websites and found out that the life expectancy was two years," says father Gary Hui, a taekwondo instructor. "I called Hilda and we both just collapsed. That there's no cure, no future for the baby … we were heartbroken."
The Huis' lives centre around Abigail and her disease. Several scares mean they are anxious when not by her side.