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She looks 15 months old, but she’s turning 15 years
old. She can’t walk or breathe on her own, and has come close to
dying many times. But she survived. It’s a miracle that she can
play the keyboard and paint, or that she laughs easily. Her rare
illness has bankrupted the family, but to her parents, she’s the
most precious person in the world.
When Mr Teo Qi Kuang and his wife Florence Chew were
expecting their first child, they were like any other
couple. “We prepared for our baby’s arrival with so much
enthusiasm. We wanted only the best for her,” Madam Chew, 44,
recounts in an interview with The New Paper on Sunday in her
four-room flat in Bukit Panjang.
“I pored over books for information and even bought a journal, all
ready to chart our little one’s developmental milestones. I even
made plans to enrol her in baby shows.”
The housewife smiles wryly, then says: “But the recordings stopped
three months into my daughter’s life.”
Pei Shan was first hospitalised when she was four months old. She
displayed signs of stridor, a high-pitched wheezing symptom that
occurs as the opening between vocal chords becomes narrower.
Madam Chew recalls: “That was when doctors noticed that her limbs
were shorter than that of a normal baby of her age. We were advised
to monitor her condition as the physical growth of girls can
sometimes be slower.”
That was the start of the couple’s journey of pain.
Mr Teo, 54, a cabby, says: “One (health) condition after another
followed. Each time we thought we’d overcome one hurdle, another
blow would hit us and we would have to go through the
roller-coaster ride of suffering and emotions. It does not seem to
end.”
Till today, doctors have yet to diagnose Pei Shan’s exact medical
condition.
Pei Shan turns 15 on Aug 5. But for all intents and purposes, she
is stuck in a baby’s body – baby fat is still present on her limbs,
and she wears a diaper.
As her parents share the girl’s chequered medical history,
we are struck by the family’s immense courage and
resilience.
Mr Teo says: “Our happiness (at being parents) turned to
despair. Sometimes, I wonder, why us? What did I do in my previous
life that I now have to repay that debt? In the beginning, we
focused only on trying to overcome the situation, there was no time
to think of anything else.”
He looks this correspondent in the eye, then adds: “I have gone to
bed wishing that I’ll never wake up the next morning, thinking that
it would be so much better that way.”
While it may be just a passing thought, it reveals the intensity of
his helplessness and frustration.
“But I quickly remind myself that it would be so irresponsible. My
wife and child will be left to care for themselves.”
Madam Chew gave up her job as a bank clerk to become Pei Shan’s
full-time caregiver when the girl was nine months old.
Today, the devoted mother is sensitive to every sound that comes
from her daughter’s room.
In the first hour of the interview, Madam Chew excuses herself
several times to attend to her child.
“She’s calling out for us.
“Because of Pei Shan, I have become very sensitive to sounds,
especially the ones that she makes.”
She points to the oxygen machine and says: “You hear this
(whirring) sound? It sounds normal to you, right? But no, the sound
I hear tells me that it’s time to send for someone to service the
machine.
“I can hear the sound from the anklet that she wears even when I am
in the toilet or kitchen. Or she’d go, ‘mee’ (short for mummy), and
I can hear her calling for me. She makes a movement, I’d be able to
hear it. Even if it’s very noisy.”
Pei Shan is home-schooled.
Madam Chew says: “When Pei Shan was about two years old, she
attended Margaret Drive Special School for about a year. But being
exposed outside meant she was more prone to infections, and that
would land her in the high dependency ward.
“Once, her oxygen level dropped to nearly zero and she turned
totally blue. We almost lost her then.”
Mr Teo adds in a choked voice: “Whenever she is infected and has to
be warded, she has to go through rounds of suffering. Doctors find
it tough to draw blood for tests or insert drips because they
cannot find her veins.
“Despite the pain, Pei Shan does not cry. She will just bear it
because she knows it hurts us. But you’d see big, fat drops of
tears rolling down from the corner of her eyes.
“And my heart just shatters.”
They eventually pulled her out of school.
Pei Shan’s mental growth has been remarkable. She is mature
and knows how to please her loved ones.
A keen learner, she plays the keyboard and loves to
draw.
A watercolour piece that she did made it to the front cover of
Club Rainbow’s commemorative hardcover book, Colour of Life,
Celebrating 20 Years of Club Rainbow, last year.
Pei Shan communicates mostly in English, but she can also speak
Mandarin and Teochew.
Mr Teo says: “She is definitely getting better now... and stronger.
I love her so much... it’s like... ”
His voice trails off and he pauses for a full 20 seconds as he
fights back tears and tries to regain his composure.
He raises his hand to wipe his eyes, then continues in an
emotion-choked tone: “She is my precious child.”
Madam Chew is the caregiver and disciplinarian.
She says in an amused tone: “My daughter always says that mummy is
the one who nags and nags. Papa does not scold her. And he gives in
to all her requests.”
We ask Pei Shan: “Who do you love more?”
She breaks into a big smile, giggles, then says: “Both.”
Madam Chew replies teasingly: “(Are you) sure or not?”
Pei Shan’s smile widens.
Who is more fierce? “Mummy.”
Does your daddy scold or punish you? “Don’t have.”
What about mummy? “Yes.”
Pei Shan’s responses indicate a child basking in her parents’
love.
Every little action, word or sentence are what the couple
consider miracles.
She spoke her first word when she was about four years old.
Madam Chew recalls: “She was sitting here (in the living room) and
I was in the kitchen opening the freezer door when I heard a small
voice go ‘ice’.
“I was stunned. And I was wondering if she said ‘eyes’... but I
realised she was referring to ice cubes.”
Mr Teo shares how once, when Pei Shan had to be sent to the
intensive care unit, his wife was crying so hard because they
thought they would lose her.
“As my girl was being wheeled into the lift, I heard her call out
‘Daddy’ so loudly. That was when I told my wife not to worry. I
knew for certain our little fighter would be fine,” he says.
Going out with Pei Shan wasn’t easy at first.
Madam Chew says: “They’d say, ‘Wah so pitiful’ and I’d boil (with
anger). Some parents would pull their children away, like my
daughter is a freak, and that made me fed up too.
“I used to get very angry, but her papa would advise me not to
allow them to affect me.”
She adds: “But there are also kind and nice people, who’d chat or
play with her.”
Mr Teo finds consolation in the fact that Pei Shan is oblivious to
the outside world.
He says: “Sometimes, she’d ask us why she looks different from the
other children (of the same age), and we always tell her that’s
because she is special and unique.
“She is a happy child and little things like watching her
favourite show or eating her favourite food make her day.”
The future, however, remains uncertain.
Madam Chew says: “Other than telling us that she is suffering
from ‘a very rare disease’, no doctor or professor has been able to
give it a name.”
Right now, her medical record reads: “Mucopolysaccharidosis Type
III (MPS III)?”
MPS III is a progressive disorder that mainly affects the brain and
spinal cord (central nervous system). Sufferers generally do not
display any signs of the condition at birth, but symptoms begin to
appear during early childhood. Affected children often initially
have delayed speech and behaviour problems.
“But even visiting professors and doctors (from overseas) have told
us that Pei Shan’s case does not quite seem like it,” says Madam
Chew.
Mr Teo says: “Whatever it is, we just know it’s like a blood
disorder.”
Mr Teo says they had to abort plans to have another baby.
“Doctors told us that if we have a second one, there is a 70 per
cent chance that the child will be like Pei Shan. Would you dare
take that risk?”
Though the family is now getting financial assistance from KK
Women’s and Children’s Hospital’s medical social welfare, the
initial medical expenses have taken a toll on them.
Mr Teo is a declared bankrupt.
The former insurance agent used to earn up to $10,000 in a good
month.
He says: “As I became more preoccupied with her condition, I lost
the passion to work. One thing led to another, and soon I found it
hard to keep up with the payments.”
He now drives a London cab, which also doubles up as Pei Shan’s
mode of transport.
“I asked to switch to it this year when my old cab was up for
scrap.
“It’s so much easier to move around with her because we don’t have
to fold up her customised stroller, which carries a heavy tank of
portable oxygen.”
Mr Teo is now worried about his own health – he suffers from
Slipping Rib Syndrome, a condition that has worsened in the past
couple of years.
“I went for another MRI last month, and the doctor told me that
it’s in a ‘very severe’ state. He suggested that I undergo an
operation,” he says.
Cost, however, is an issue.
“Where do we find the money? And the worst part is, there is no
guarantee I will recover. I’ve been warned that it’s a time bomb
sitting inside me, but what if I become paralysed even faster than
if I had left it alone?”
He prefers to take it one day at a time. It’s the same approach he
adopts with his child.
“One small step a day. For me, as long as I return home and my baby
can greet me in her usual cheerfulness, filled with so much love,
it’s a day well lived,” he says.
Which perhaps explains why Madam Chew “complains” that “papa spoils
the little one”.
“He’d give in to all her requests, like buying an extra pack of
biscuits when she still has half a packet at home,” she says with a
laugh.
Pei Shan loves to order home delivery.
Madam Chew says: “I cut her hair once a month, and one day, I told
her, why not sometimes when I do that, we order fast food?
“She was so happy that she told her father when he returned home...
and he included a bonus, ‘Let’s do that once a month then. You get
to order what you like when you have a haircut’.”
Mr Teo laughs heartily and Pei Shan’s face lights up in a big,
bright smile.
Pei Shan’s life expectancy is not known, say her
parents.
Madam Chew says: “I have thought about it and I can tell you
honestly, I hope she’ll go before us. Otherwise, who will take care
of her?
“It took us so many years to learn how to take care of her
intricate condition, to be absolutely careful.”
She adds: “I have told Pei Shan before, ‘If one day you find
yourself fighting for your life (in the hospital) and the pain is
unbearable, just let go. Mummy will let you do so’.
“I told her that she’d go to heaven and she should not worry about
papa and mummy.”
Madam Chew smiles sadly: “Pei Shan asked me, ‘Then what will you
and papa do?’
“Well, I replied that her father will likely continue working and
I’d look after others, like suffering children or her
grandmother.”
And the innocent girl asked: “Then what will I do in heaven?”
Madam Chew says: “I told her she’d be an angel. Our little angel in
heaven.
