SINGAPORE – Five years ago, when Ms Amanda Ng was 14, she decided to switch to homeschooling so that she could help her parents care for her bedridden sister, who has a rare genetic disorder.
That was when Amelia’s condition deteriorated to the extent that she – then 11 – started to have life-threatening episodes, one of which helped to cement the elder sister’s decision.
“When I came home from school one day, I saw my mum shouting and my helper panicking, trying to get Amelia to breathe again,” Ms Ng said.
“My dad was trying to make her sit up. We didn’t know how to do bagging (rescue breathing) then. She survived, but it really shook me up. If I know my younger sister’s life would not be as long as others’, what am I waiting for?”
Amelia was intubated at 12 and has been relying on a ventilator to breathe ever since.
The transition to home-schooling was very hard for Ms Ng, a self-described social butterfly who was in a school band and on the school council, but she persevered.
On Wednesday, she was among the eight recipients – all females – of the Singapore Patient Caregiver Award at the annual Singapore Patient Action Award.
The award honours caregivers for their strength, resilience and unwavering dedication in caring for another person amid challenges.
HCA Hospice’s palliative homecare nurse for Star Pals (Paediatric Advanced Life Support), Ms Poh Ya Nee, who nominated Ms Ng, said the teenager helps her sister in all daily activities of care, including tube feeding, suctioning and urinary catheterisation, among other duties.
Ms Ng would also coordinate life-saving resuscitation during emergency episodes and participate in end-of-life conversations, she said.
Last year, when Amelia was 15, it became clear that the neurodegenerative disorder she has is infantile neuroaxonal dystrophy, and most children with this disease do not live past 10.
“The most challenging thing for me is that I won’t be able to see my sister in my life forever. I’ll never be able to do a lot of things with her,” said Ms Ng.
“I know the time is limited. What we hold on to are the memories. We talk about death with her.”