SINGAPORE - Whenever Lee Jue Ming goes out to play, his mother's heart skips a beat. The six-year-old has severe haemophilia, a rare condition that prevents the blood from clotting.
Jue Ming has less than 1 per cent of the normal amount of clotting factors in his blood. He bruises easily and often suffers spontaneous bleeding in the muscles and joints even when there is no injury.
If he falls and cuts himself, the result can be devastating. He will need immediate infusion of blood-clotting proteins, also known as clotting factors, to stop the bleeding.
So his mother, Madam Ong Lee May, 40, a human resource assistant, would often take Jue Ming and his sister, Wan Ting, 10, to the indoor playground at Changi Airport Terminal One. The playground's padded surfaces help cushion falls.
"The admission is free. We always try to be the first one there at 8am to avoid the crowd. We would play with him, climb with him and just follow him around in case we need to catch hold of him if he falls," said Madam Ong.
The boy is one of about 200 males in Singapore who have haemophilia, a genetically inherited disorder which affects only males. Females are carriers of the haemophilia gene.
There are an estimated 420,000 haemophilia sufferers worldwide. They observed World Haemophilia Day 2014 last Thursday.
Dr Tan Hooi Hwa, president of the Haemophilia Society of Singapore, said that a haemophilia patient spends on average $3,000 to $4,000 a month on regular infusions of clotting factor to prevent spontaneous bleeding.
With subsidies, the treatment costs $1,500 to $2,000.
In Jue Ming's case, his treatment costs $1,440 a month and is now fully covered by Medifund.
This is a relief to Madam Ong, whose take-home pay is about $2,000 a month.
Her husband, Mr Lee Kwong Luen, 43, quit his job as a mechanic when Jue Ming was six months old to care for him full-time.
"We hope that Jue Ming stays healthy, safe, happy always and can take care of himself eventually. If he can do well in his studies, it will be a bonus," said Madam Ong.
The Haemophilia Society of Singapore is having a charity screening of The Amazing Spider-Man 2 on May 4 to raise funds for needy patients. Tickets are priced at $50, $100, $200 and $300. For more information, visit their website at http://haemophilia.org.sg.
This article was published on April 19 in The Straits Times.
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