Mums of haemophiliacs honoured

Mothers, who are carriers of the gene causing the disorder, often struggle with guilt, says Society
By Chitra Kumar, The Straits Times, 3 May 2016

Six-year-old Ong Yehing was diagnosed with haemophilia, a condition in which the blood does not clot properly, when he was just six months old.

A genetic disorder that generally affects males, it is often passed down by mothers as women are carriers of the haemophilia gene.

His mother, Ms Lim Ting, said she knew little about the condition back then and felt judged by family members and relatives.

"I was very depressed when I got to know (about it). It was stressful. People didn't understand. My son was getting comments that he is not normal," said the 37-year-old housewife. Her younger son, Yexiang, four, also suffers from the genetic disorder, a complicated type of the condition called haemophilia with inhibitors.

"We took a gamble with our second son. It was a 50-50 chance. Unfortunately, he is also a severe haemophiliac," Ms Lim told The Straits Times at an event held yesterday by the Haemophilia Society of Singapore to mark Mother's Day this Sunday.

The non-profit society said many mothers struggle with guilt as carriers of the gene. There is no cure for haemophilia. Victims bruise easily, suffer bleeding in muscles and joints, and can bleed to death when they are injured.

There are about 250 haemophiliacs in Singapore - about 230 are members of the society. Its youngest member is 10 months old while the oldest is 83 years old.

Nine of the society's members gathered yesterday to bake cookies and cupcakes at bakeware store ToTT Store in Dunearn Road to thank their loved ones this Mother's Day. One of them is Mr Lee Lye Onn, 62, a retiree, who wanted to honour his wife.

"She has been through a lot," said Mr Lee, who has two children.

He added that he does not blame his late mother for his condition.

"In fact, I love her as she had to put in extra effort to take care of me," said Mr Lee.

This is certainly the case for Ms Lim, who quit her job as a trade service officer with the Singapore International Chamber of Commerce to care for her elder son.

The early days were so emotionally and physically draining that she would "just cry", she said, as she had to be her son's "surveillance camera" and constantly keep an eagle eye on him.

But she has since learnt to cope.

"I have to anticipate their falls and make sure their living environment is safe, like making sure the toilet floor is not wet so that they don't fall," she said.

Her elder son's treatments cost about $400 a month after subsidies from the society, while treatment for her younger son can cost up to $15,000 a month, which is fully covered by Medifund.

She credits her husband, Mr Ong Chihung, 36, who runs a wallpaper business, for supporting her.

"He is always there," said Ms Lim, adding that he would often remind her not to stress herself out. He would also ask her to step away when their sons need intravenous drips inserted, knowing she cannot bear to watch them suffer.

"I hope my sons don't blame me," she said. And Yehing certainly does not. He told ST he plans to make a card for his mother for Mother's Day . His message: "I love you".

The Haemophilia Society of Singapore is holding a screening of Captain America: Civil War at The Cathay cinema in Dhoby Ghaut to raise funds this Sunday.

Go to www.haemophilia.org.sg for ticketing details.