A leap of Faith

Haemophilia is a condition that affects mostly males but there are rare exceptions.

Six-year-old Faith Loh is the only female with haemophilia here. There are about 250 haemophiliacs here, according to the Haemophilia Society of Singapore (HSS).

Sufferers of the rare inherited blood disorder have low or no "clotting factors" - proteins in the blood that control bleeding. So haemophiliacs bleed for a longer time.

When she was younger, Faith would get bruises that could take weeks or even months to heal.

Her mother, Mrs Anne Loh, 43, a housewife, realised something was amiss only when Faith's younger brother, James, was diagnosed with haemophilia.

"We found out about James when he broke his front tooth and had to go for tooth extraction. He kept bleeding non-stop," she said.

UNCONDITIONAL LOVE

Ultimately, children are gifts from God. We love them regardless of their condition. Sometimes we may be tested, but society should not see them as a burden.

MRS ANNE LOH

  • WHAT IS HAEMOPHILIA?

  • • Haemophilia is a rare inherited blood disorder, in which a person lacks certain proteins, called clotting factors, that regulate bleeding.

    • People with low levels of factor VIII have haemophilia A and people with low levels of factor IX have haemophilia B.

    • Haemophilia is graded mild, moderate or severe depending on the level of clotting factors in the body.

    • Compared with a normal person, haemophiliacs bleed for a longer time.

    • If a man is healthy, he does not have the haemophilia gene as the X chromosome from his mother is normal. If he marries a woman who is a carrier of the gene, there is a chance that their son may have haemophilia and their daughter may carry the gene from the mother.

    • The haemophilia gene is located on the X chromosome. Males are usually affected as they are born with one X and one Y chromosome, while females - bearing XX chromosomes - are usually carriers of the gene.

"By the third or fourth day, he was turning pale and was eventually diagnosed with haemophilia."

After a series of tests, Faith was also diagnosed with the same condition. She was three years old then.

"I could not believe it. I was shocked and devastated because she will probably be a carrier, just like me," said Mrs Loh.

The Lohs have three children - Faith, James, four, and Beth, who is two and not a haemophiliac.

Mr Loh, a 46-year-old civil servant, did not want to be named in full due to work restrictions.

He does not have the haemophilia gene. Mrs Loh is a carrier, but no one in her family has the condition.

As Faith has moderate haemophilia, she needs infusions of clotting factors only when she bleeds.

However, James' case is severe. Bleeding can happen for no reason. He requires weekly infusions of clotting factors.

Faith's haemophilia is caused by a condition called Turner syndrome, a rare chromosomal disorder. She is shorter than others of her age, one of the signs of Turner syndrome.

At home, Mrs Loh childproofs the entire house so that the children do not hurt themselves.

The family switched from marble to vinyl flooring as it is less slippery and reduces the impact of falls.

There are corner guards on sharp edges of the furniture and the children play on rubber mats.

During outdoor play, Faith and her brother wear helmets and knee guards for protection. They swim two to three times a week.

Fortunately, Faith has not suffered any injury in over two years. One reason is that Mrs Loh homeschools her and her siblings.

James' weekly clotting factor infusions cost at least $400 a month. This is after the 65 per cent subsidy from the hospital and a monthly subsidy from HSS.

Without subsidies, the family would have to spend almost $2,000 monthly. As the children grow older and need a heavier dosage, treatment costs are expected to rise.

Despite this, the Lohs remain optimistic as the children bring them a lot of joy. "Ultimately, children are gifts from God," said Mrs Loh. "We love them regardless of their condition. Sometimes we may be tested, but society should not see them as a burden. They can lead a normal life and contribute to society."

A version of this article appeared in the print edition of The Straits Times on June 16, 2016, with the headline 'A leap of Faith'. Print Edition | Subscribe