M'sian boy, 15, with end-stage liver disease in S'pore, still can't find donor after 14-month search

A 15-year-old Malaysian boy in Singapore for an urgent liver transplant has had a fruitless search for a donor for some 14 months, despite resorting to handing out flyers on the streets with his mother.

Boon Heng, who suffers from a chronic condition, primary sclerosing cholangitis, has had a long-standing fight with liver disease, for which his family came to Singapore to seek treatment.

In March 2023, doctors told them that the boy needed a transplant within three months, or he could be at risk of life-threatening hemorrhages.

However, their search to find a suitable donor has not borne fruit, despite more than 10 prospective donors coming forward.

Boon Heng's mother, surnamed Li, told Mothership that his liver condition was found to be have deteriorated to a "worrying" state when he went for a monthly checkup at the National University Hospital (NUH) on Wednesday (Jun. 19).

So, they've renewed their search for a donor.

More than 10 screened; all incompatible

Li, Boon Heng's primary caregiver, added that her son has been on the waiting list for a donor since April 2023.

The family has been surviving on Li's husband's salary as a mechanic in Singapore.

The duo were previously spotted on the streets of Jurong East, Queenstown and Clementi giving out flyers in their search for donors.

Since media attention had highlighted his case, the family has been contacted by more than 20 people, with over 10 coming forward to be screened for eligibility.

However, they have all been found to be incompatible donors because of differences in "anatomy".

Since May, no new donors have come forward, Li said.

Condition deteriorated, unsure how long he will last

In February, Boon Heng had to be hospitalised and was briefly admitted into the Intensive Care Unit (ICU) following a high fever that affected his liver function readings.

He was given an antibiotic injection and was monitored in a normal ward before being discharged.

However, a blood test on Jun. 19 indicated "abnormal readings" for Boon Heng's condition, and coupled with his low blood pressure, meant he would need to be hospitalised for another two weeks for observation.

Doctors also said his liver function had steadily worsened, so he would need to increase his dosages of Prednisolone -- an autoimmune medication -- and his blood pressure medication.

This came as a blow to Li.

She said the medication can only help manage the symptoms and "delay" the deterioration of his condition.

His appetite has also worsened, she added.

NUH staff have continued to press Li on the urgency of finding a donor, but did not provide a deadline this time.

"So we've renewed our search for a donor. We're desperate because we don't know how long his body can hold out," Li said.

Prospective donors can approach NUH transplant centre

An NUS spokesperson had previously said in response to Mothership's queries that they are working with the family to provide support and assistance where possible.

National University Centre for Organ Transplantation at NUH does not participate in the public search for donors, but the centre has a dedicated transplant coordination team that helps facilitate the screening process of eligible donors when they come forward.

Members of the public who wish to donate to a particular person can approach the transplant centre for assessment.

How to help

For more information on how to help Boon Heng, you can check out the family's Give.Asia donation appeal or contact Li via WhatsApp at 9357 6128.

Top image from Li