Mum uses photo to remind him to be careful because...
May 02, 2007
LITTLE Ng Kheng Chew gets injections three times a week.
He isn't allowed to take part in physical education lessons, or rough sports.
When he hurts himself, a bruise can take more than six months to heal. If an injury is left untreated, it may result in paralysis or even death.
The eight-year-old Singaporean was born with haemophilia, a condition which prevents blood from clotting. It is an ailment that can be treated and kept under control, but cannot be cured completely.
Kheng Chew has severe factor VIII haemophilia, a mutation in the factor VIII gene. His brother, 5, and his parents are all normal.
Since last year, Kheng Chew has been receiving treatment to prevent his condition from worsening, but not all haemophilia sufferers are as fortunate.
The chairman of the Haemophilia Society of Singapore (HSS) Dr Tan Hooi Hwa said between 20 and 30 per cent of all sufferers here skip treatment because of high medical costs. (See report on facing page.)
EARLY SIGNS
Kheng Chew's mother, Madam See Ek May, 42, a senior food technologist, suspected something was wrong when her first-born was only four months old.
Said Madam See: 'He would be covered in bruises, with blue-black marks all over his arms and legs. And at that time, he could barely crawl.'
When she took him to the National University Hospital (NUH) for his regular checkup five months later, she was advised to to take him for further checks.
'They said it was possibly one of two things - that he was ill, or that the maid was abusing him.'
When Kheng Chew was 10 months old, a blood test at NUH confirmed that he had haemophilia.
Said Madam See: 'My heart sank. I didn't know at the time how to deal with the news.'
More so because she hadn't heard of this condition before.
SCARY ACCIDENT
A month later, Madam See had a scare at home. Kheng Chew slipped, fell backwards, and knocked his head on the floor.
The next day, he vomitted.
A CT scan showed that a blood vessel in his brain, leading to the optic nerve, had burst.
She said: 'The doctor said that if he wasn't treated, the bleeding wouldn't stop and he would become blind.'
He was given injections of the missing clotting factors to help stop the bleeding.
Over the years, Madam See has been taking special care to make sure Kheng Chew does not get into accidents. He is not allowed to handle sharp objects.
The walls of his home are lined with pillows. Sharp corners of furniture are also covered in soft cushions.
He goes to a normal school and does have not have any special arrangements there. Usually, his mum drives him to school.
Doctors have warned that severe haemophilia can cause bleeding in the joints, which can result in paralysis.
When Kheng Chew was 4, MadamSee noticed he was walking with a limp.
His left ankle appeared swollen and bruised. The pain came on and off.
Then last year, he developed a similar pain in his right shoulder. A check confirmed her worst fears - there was bleeding in his joints.
Doctors said that he would have to be given regular injections of factorVIII till he reaches adulthood to prevent the condition from worsening.
Madam See said: 'I was told that if I didn't start him on regular treatment now, there was a high chance he would one day not be able to walk.'
During his year-end examination last year, Madam See had to carry her son to school because of the pain in his joints.
'I had to accompany him the whole time while he took his exams, and carry him to and from the toilet whenever he had to go.'
Since last year, she has been giving him injections at home three times a week. Subsidised by the Health Ministry and HSS, it costs her $600 a month.
Madam See and her husband, 47, an insurance manager, earn a total of more than $5,000 a month.
She lets him take swimming lessons once a week and takes him cycling every weekend.
ACTIVE CHILD
'He's an active child, and I know it's not easy for him to just sit quietly and watch others play. He has to have some outlet for his unspent energy, and doing low impact sports is good for his health.'
She says she keeps a close watch on him.
Madam See hopes there will be a cure for haemophilia sufferers, one day.
'For now, I just hope for my son to grow up as a strong and resilient person, so that he will be able to cope with his illness, and still become a useful person in society.'