SINGAPORE - Seven-year-old Danielle Seah may be bedridden with three tubes sticking out of her throat and stomach, but she is still able to respond to the beat of her favourite song, The Wheels On The Bus Go Round And Round.
During a music therapy session on April 11 in her home, her eyes darted between her father, who was beating a drum, and her sister, Beth, 11, who was strumming a ukelele. Moving in time to the rhythm of the catchy song, her tongue flicked up and down.
"She has lost almost all her ability to move, so we hope to slow down the progress of the disease and retain her remaining functions through music," said her father, engineer Frederick Seah, 40.
Danielle has spinal muscular atrophy, a disorder that causes muscles to weaken until it becomes hard to move or even breathe.
She is one of the 140 critically ill children that HCA Hospice Care has helped care for in the comfort of their homes since its Star Pals (Paediatric Advanced Life Support) programme started in 2012.
So far, it is the only home palliative care service here for children with life-limiting conditions such as childhood cancers.
The programme aims to improve the quality of life of sick children by supporting them at home so that they do not have to be hospitalised.
Its team of doctors, nurses, social workers and therapists work to prevent and reduce symptoms through regular home visits. Caregivers can call a 24-hour emergency helpline.
Art and music therapy sessions are arranged for the children and family members for them to de-stress, express their feelings and bond with one another.
Trained volunteers "babysit" the sick child so that caretakers can get time off.
When the child dies, bereavement care is extended to family members.
On average, the children and their families use the Star Pals service for about a year.
Dr Chong Poh Heng, programme director of Star Pals, said about 2,000 patients aged 19 and below have life-limiting conditions. "About 250 children die in Singapore every year, so we hope to reach out to more of these families to help them cope better," he said.
Said Danielle's mother, Ms Rebekah Choong, 38: "We were going in and out of hospital and were like headless chickens trying to do all we can for her but tiring everyone out in the process."
So the family was grateful to have a doctor go to their house and guide them through advance care planning.
For the last two years, Star Pals staff has visited the family every week and, subsequently, every few weeks.
They could also call the helpline to get medical advice whenever Danielle gets short of breath or when the feeding tube bursts.
When Ms Choong quit her finance job last year to care for her daughter, the family worried about medical expenses. After means testing, Star Pals offered them the service for free. Otherwise, the service would have cost $30 to $90 a month.
The Tote Board Community Healthcare Fund has injected $3 million to cover most of the cost of the three-year pilot programme.
Mr Seah said: "We are no longer struggling alone and now have the confidence and peace to enjoy the journey and care for Danielle ourselves at home.
"It is a godsend and we hope more children can be supported at home in their last days."
This article was first published on April 24, 2015.
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