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.'