When five-year-old Ryssa fell ill with a rare blood disease called Myelodysplastic Syndrome, nobody knew if she would survive.
Three years later, she is still going strong, thanks to a bone marrow donation from Mr Phil Tan, who had signed up with Bone Marrow Donor Programme (BMDP) after chancing upon their videos.
Phil never expected to meet the girl he saved, but on April 19, he met Ryssa for the first time during BMDP’s Celebration of Heroes event.
“I would call it a heartwarming closure. As part of the BMDP programme, you’re not supposed to know who the recipient is…it’s a question I’d never expected to be answered,” Phil said.
On stage, Phil was among the 22 donor-heroes who shared the media spotlight while Minister of Home Affairs and Law K. Shanmugam applauded their volunteerism. Without their sacrifice, many of the blood-disease patients awaiting a bone marrow donation would not have had a second chance at life.
Given Ryssa and Phil’s heartwarming story, why aren’t there more people registered as donors? Many are afraid to do so because of two misconceptions, explains donor manager Jerene Ng. The first is that donating bone marrow has an impact on one’s future child-bearing ability. The other is that it causes paralysis.
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Jerene, 39, who guides donors through the entire process, said the most insidious and prevalent myth is that bone marrow donation causes long-term infertility.
“Often, the family will oppose their children’s bone marrow donation on the grounds that they want grandchildren in the future,” said Jerene.
In order to convince these reluctant parents that their children’s bone marrow donations would have no impact on their likelihood of becoming grandparents, Jerene often makes home visits to the families of young potential donors. She has travelled from Tuas to Tampines, armed with testimonials from doctors and previous donors.
“After all, it’s completely untrue. Many donors that I’m in touch with have gone on to conceive,” she explained. She added that there is no medical evidence of any risk apart from temporary lower backache.
Fears of infertility aside, many potential donors are also deterred because they believe that bone marrow donation will leave them weak, or even paralysed from the waist down.
Of course, Phil and the other donors proved this was false when they walked on stage to receive their awards. As Phil himself testified with a laugh: “On the evening of the day I had the operation, I was walking around the room, even though the doctors advised me to rest.”
With time and persuasion, Jerene and donors like Phil may be able to win over a reluctant potential donor. Time, however, is often in short supply because many patients are already in critical condition by the time a match is found.
From there, it’s always a race against time to find and guide the potential donors through the process. Sometimes, these registered donors cannot be found because they’ve moved overseas. Other times, it becomes a high-pressure scenario for donor managers like Jerene because potential donors are hesitant to commit.
A common question that potential donors ask is, “Can you tell me if I’m the only match?”
Unfortunately, this is not a question that Jerene can answer because she is not privy to this information due to medical confidentiality.
“Even if I could, what if there are seven matches and all of them say no?” she said.
In some of the most frustrating cases she has gone through, the potential donor would pull out at the last minute – after confirmatory medical tests had been done, and the desperate patient already told that a match had been found. The hospital’s patient services staff would then have to break the bad news to the patient that their potential match had reconsidered.
“We do feel for the patient when the donor says no but we have to respect their decision,” Jerene explained. “What we do is to immediately search for another donor.”
To prevent potential donors from dropping out at the last minute, her work as a donor manager is a 24-hour effort. At 7am in the morning, she arrives at the hospital to direct and support the donor. By 11.30pm at night, she is still on standby to answer questions from tomorrow’s donors.
“The last thing I want is for them to be confused and unsure of what to do,” she said.
Despite these challenges, she is also heartened by the many heroes who regularly step up despite the obstacles they face. At the Celebration of Heroes event, many of the donors who were invited could not attend because they did not want their families to know that they had donated their bone marrow.
To this day, their sacrifice remains a secret to everyone around them.
These unsung heroes, both donors and behind-the-scenes workers, may not have made the headlines, but their efforts are no less worthy, for the hope they’ve given to patients who are still waiting for a match.
Meanwhile Phil, whose sacrifice saved a young child’s life, is prepared to do it once more, if required.
“If I ever get called up again, I’ll definitely go through it,” he said.