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http://yourhealth.asiaone.com/content/ne...dlers-body
Tuesday, Dec 31, 2013
The New Paper
By Maureen Koh
SINGAPORE - As Pei Shan begins to sing You Are My Sunshine, everyone in the hotel room is captivated by her small, scratchy voice that is filled with so much happiness.
Life is better for this little miracle - a 15-year-old girl trapped in a baby's body, with baby fat still present on her limbs.
In the hour-long interview at the Singapore Marriott Hotel, Mr Teo Qi Kuang tells The New Paper on Sunday: "We are really grateful for all the offers of help, kind words, encouragement and support that we have been getting after Pei Shan's story was published."
We first ran an interview with Mr Teo, 54, and his wife, Madam Florence Chew, 44, in July.
Then, they had shared their love for their tiny, teenage miracle who, because of her rare medical condition, cannot walk or breathe on her own.
Pei Shan has come close to dying many times. Her rare illness has also taken its toll on the family's finances.
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. Her father was made a bankrupt.
But to her parents, she is the most precious person in the world.
Till today, doctors have yet to diagnose Pei Shan's exact medical condition.
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 features of the condition at birth, but they begin to show signs and symptoms of the disorder 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 too," says Madam Chew.
The name no longer matters. Mr Teo says: "Whatever it is, we just know it's like a blood disorder."
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."
Pei Shan is home-schooled. Her 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.
Readers moved by the plight
And our readers were clearly moved by the resilience, courage and love that this family of three shared.
There was an outpouring of pledges to help ease the family's finances, among gifts of love and support.
Indeed, even the family's current weeklong hotel staycation was sponsored by two separate generous donors, and Pei Shan's three aunties.
Mr Teo says: "Pei Shan's condition does not allow her to go for long outings or travel overseas. So a hotel stay is a treat."
She usually gets a hotel staycation once a year - sponsored by Mr Teo's sisters - in August, when she celebrates her birthday.
But since her story was published, generous sponsors have stepped up to give her other treats, like this hotel stay.
Pei Shan, he says, was so excited the morning they were due to check in to the hotel, she woke up and kept "singing and dancing, 'I am so happy, I am going to the hotel'."
Mr Teo says: "Life did change after the report was published. We're not that stressed financially now, with the help that has come from the public."
The donations have helped ease the family's strain even as they continue to depend on the financial assistance from KK Women's and Children's Hospital's medical social welfare.
Mr Teo admits that it feels better that they can afford to shower Pei Shan with more treats now.
"Not like last time (when it was) so tight," he says with a small smile.
He also appreciates that he can take sometime off from driving his London cab.
"I used to worry that we still have to pay the daily rental - $130 to $135 - and making sure that I do enough rounds to cover it. Now, I get to spend more time with Pei Shan without having to worry too much," he says.
Gawking strangers turn into well-wishers
The publicity has also turned gawking strangers into well-wishers.
Going out with Pei Shan wasn't easy initially. Madam Chew relates her earlier experiences: "They'd say, 'Wah so pitiful' and I'd boil (with anger), some parents would pull their children away instantly, like my daughter is a freak, and that makes me fed up too.
"I used to get very angry but her papa would advise me not to allow them to affect me."
Today, it's a different story.
"When we go for a walk, people will come up and say hello... And even when we are at KKH, we will meet new friends who share encouraging words and support," says Madam Chew.
Mr Teo's wish for 2014 sounds simple even as it belies difficulty: "That both of us will continue to have that kind of courage and inspiration to take care of Pei Shan.
"Her condition is not the kind where we can get someone else to look after her, she needs our attention every minute, 24 hours a day."
For her and her parents' efforts, Pei Shan has been nominated for the Singapore Health Inspirational Patient & Caregiver Award.
The award, presented next March, recognises patients and caregivers who have shown strength and resilience in the face of illness.
Fighting back tears, Mr Teo says: "Anyone who knows Pei Shan's story and finds that they can learn from her - that is good because it helps them.
"There are people who have come up to us to ask how we manage to cope'."
His reply: "All you have to do is just love your child 100 per cent, accept her and give all your love to her. If you can do that, your child will be very happy."
Mr Teo wants to take this chance to thank his wife, saying: "She has done a great job. It's very tiring, but she still carries on, day after day, every minute, 24 hours, and she does it all without any complaint. She has also given 100 per cent for Pei Shan."
Madam Chew is touched by the declaration, but she says: "Without Papa, I cannot do as much as I have with Pei Shan. He is our strength.
"Whether it is the award or even just Pei Shan's story, if people look at her and can be inspired to live better, and they realise that they are actually more fortunate than Pei Shan, that is good enough."
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