Hospitals have never been her favourite place.
Particularly since she has been in and out of them since she was born, bravely enduring the many operations and tubes just to survive.
But last week, Pei Shan kept urging her parents to take her to KK Women’s and Children’s Hospital.
She has been feeling breathless and unwell recently.
See also: Teen with rare disease realises dream to play piano in front of 500 people
Her parents, first puzzled by her request, were heartbroken when they heard her reason.
Pei Shan is hoping to recover before her 18th birthday on Aug 5.
She is planning to celebrate by checking into a hotel with her family and friends.
On July 4, Pei Shan was admitted to hospital, but her condition had worsened by Friday night. She is now in the intensive care unit.
Last night, her mother Chew Siew Cheng, 47, told The New Paper on Sunday that this hospitalisation feels different from the previous years’.
Said the housewife: “Pei Shan is usually so bubbly. She enjoys eating, but she has been lethargic and eating very little lately.”
Pei Shan’s health, Madam Chew revealed, also seemed to have weakened since early this year.
In 2013, TNPS reported on the resilient girl and her dedicated parents.
Many readers poured their support and get-well wishes to the family.
Doctors have been baffled by her condition, and her medical record reads “Mucopolysaccharidosis Type III (MPS III)”.
MPS III is a progressive disorder that mainly affects the brain and spinal cord (central nervous system).
SYMPTOMS
Sufferers generally do not display any signs of the condition at birth, but symptoms begin to appear during early childhood.
Madam Chew said: “A few years ago, doctors broached the topic of Pei Shan’s lifespan and told us she would not live past her teens.
“We sense that she is growing weaker, and it might be time for her to go soon.”
Madam Chew and her husband are grateful that Pei Shan is different from other sufferers.
The home-schooled girl is chatty, and she enjoys painting and playing the piano.
In fact, she was determined to practise for her piano recital in April despite constantly feeling out of breath.
With a smile, Madam Chew recounted: “She didn’t get much practice in the end, but she was so confident. Pei Shan is always so positive.”
And the brave girl has been upbeat despite her recent health condition.
The family decided to forgo an operation in May to reduce the pressure in her eyes because of the many possible complications – but that meant she will eventually go blind.
Her doting dad, taxi driver Teo Qi Kuang, 57, said: “I told her that I will be her eyes instead.”
Madam Chew said jokingly: “She wants only her dad to be her eyes. I offered too, but she said her dad’s are enough.”
Mr Teo, who works long hours, plans to stop working temporarily to spend quality time with his daughter.
The London cab driver recently sprained his ankle and has been on sick leave.
He said: “I have to hold her hand every time she takes new medicine, or has to go for a blood test.
“She is always telling me to stop working so that we can spend time together but we can’t because of our finances.”
The couple have been mentally preparing for the inevitable, but Mr Teo admitted that it scares them.
He said: “I hear her voice the moment I reach home, telling me to switch on the air-conditioner. I can’t imagine going out without taking her pram along.
“Life without her will be very painful for the both of us.”
This article was first published on July 10, 2016.
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