[UPDATED on Monday, Jan. 15 at 11:40pm: The article has been updated with a statement from NUH.]

A 15-year-old Malaysian boy — in Singapore for an urgent liver transplant since April 2023 — has recently resorted to handing out flyers on the streets together with his mother, in hopes of finding a living donor.

The boy, Boon Heng, a Singapore permanent resident, was diagnosed with end-stage liver disease in April 2023.

On Jan. 6, 2024, he and his mother started giving out printouts explaining his condition, and the requirements for a suitable donor.

The pair's efforts have also been documented on Facebook.

First liver transplant at eight years old

The boy's mother, surnamed Li (transliteration), told Mothership that her son has had a long-standing fight with liver disease.

When he was about two, he kept falling sick for a period of more than six months.

Doctors in Malaysia found he had a swollen liver, but were not able to diagnose the cause.

When he was five, Li and her husband brought him to Singapore for a second opinion and he was diagnosed with auto-immune hepatitis.

The boy started taking medication to control the disease, but eventually needed to get his first liver transplant in 2017.

He was about eight years old at that point, and Li herself was the donor.

A successful transplant allowed Boon Heng to return to Malaysia to continue his studies, and he did not return to Singapore until post-lockdown.

Health complications, second transplant needed

In end-2022, however, the boy's health deteriorated rapidly.

Li and her husband rushed him back to National University Hospital (NUH) in Singapore for a checkup in March 2023.

Boon Heng was found to have end-stage liver disease, with complications of severe portal hypertension.

The family was told that he needed an urgent liver transplant, ideally within the next three months.

If not, he would be at risk of life-threatening haemorrhages.

The family is looking to raise S$215,000 in total, which includes surgery costs for both the donor and Boon Heng, as well as donor assessment costs, Li said.

4-5 donors found, but no match

Li said they initially managed to find four to five willing donors.

However, upon testing, none of them proved to be a suitable match.

Li herself was advised against donating a second time, while her husband does not fit the profile required.

The family has since moved to Singapore in hopes that Boon Heng might have a better chance of being placed on the waiting list.

They are looking for an O+ blood type donor between 21 and 50 years old, with no history of medical conditions.

Li said she also tried posting regular updates about her son's condition on Facebook in hopes of finding a donor.

"[But] since then, we still haven't found a suitable donor. I don't know how long we can wait," Li said.

Decided to hit the streets with flyers

Recently, Li had an inspiration after seeing mailers in her block's mailbox in Jurong East.

She briefly considered printing and distributing mailers to residents, but reasoned against it as it would be too expensive.

Since Li left her job in Malaysia, the family has been surviving on her husband's salary as a mechanic.

"I decided to try giving out flyers in person instead. At least, if people reject me and return the flyer, that's one less piece I would have wasted," Li said.

So, from Jan. 6, she and Boon Heng started making their rounds to distribute the printouts.

They've been going around Jurong East, Queenstown and Clementi so far.

Since trying out this method, Li said she has been contacted by one potential donor, but the person was hesitant to do further blood tests.

"I have no choice"

Li admitted that they faced many rejections while giving out flyers.

Some people were suspicious of why a Malaysian mother-and-son pair would be trying to find liver donors in Singapore.

"But I have no choice," she said.

She shared that she had heard of a similar case in Malaysia in August 2023, when a boy with liver disease passed away before the date of his transplant surgery.

"It affected me a lot when I heard it. I was so scared," Li admitted.

Since the diagnosis, doctors have also advised Boon Heng not to engage in vigorous activities.

"We don't know when a rupture might happen. That's what we're really worried about," Li said.

We are working with the family to provide support and assistance: NUH

In response to Mothership's enquiries, an NUH spokesperson confirmed that the hospital is aware of a patient currently receiving multidisciplinary supportive care for primary sclerosing cholangitis from their medical team, but declined to comment further on the case due to patient confidentiality.

The spokesperson clarified that the 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.

"We are working with the family to provide support and assistance where possible," the spokesperson added.

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

Members of the public who wish to donate to anyone on the waitlist can approach the National Organ Transplant Unit (NOTU).

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 courtesy of Li.