This mum's unfazed by kid's rare illness

SINGAPORE - It has been one hard blow after another for Madam Lee Biyi and husband Allan Yeo, both 38.

Her first pregnancy had to be terminated because the baby's heart had stopped beating. Her second child suffered a brain haemorrhage as a newborn baby and, now, dyslexia. In 2006, her third child - a girl named Robby - was diagnosed with Williams syndrome, a rare developmental disorder.

Thankfully, all was well when it came to her fourth child, a boy. But her fifth, who was premature, died in November when she was just eight days old. But the journey was particularly hard in Robby's case because her condition was so rare that Madam Lee did not know where to turn to for help, the financial consultant said.

MyPaper met mother and daughter on Wednesday night at the family's three-room condominium unit in Bukit Batok.

There is something different about Robby, but one hardly notices it at first, due to her bubbly demeanour.

But look closer and you would notice her elfin features and overfriendliness with strangers - trademarks of the disorder.

Robby's development was also slower than that of most other children - which raised the red flag for her parents. She started to walk only when she was two years old, which was also around the time she said her first word. Babies typically walk and talk by the age of one.

The disease was so rare that it took consultations with four doctors before Robby was diagnosed correctly.

The first doctor picked up a heart murmur, but left it at that. The second said Robby was perfectly fine. The third referred her to a paediatric geneticist, who picked up the Williams syndrome.

"We were upset, naturally, but we know there's no cure," she said. "Many parents with special-needs kids will break down, but the first thing that struck us was, what can we do for her?"

Her husband, a teacher, said: "I just knew something was wrong. We felt relieved when she was diagnosed, as we could then start doing something, instead of being stuck, not knowing what to do."

Williams syndrome affects one's learning ability, with symptoms including low muscle tone, which affects mobility. Someone with Williams syndrome will be smaller-sized, intellectually slower and at higher risk of suffering heart failure.

Associate professor Denise Goh, head and senior consultant of National University Hospital's Division of Paediatric Genetics and Metabolism, said: "There are at least 20 to 30 patients with Williams syndrome in Singapore. This may be an underestimation as some may not be diagnosed. The incidence rate is about one in 20,000."

Madam Lee noted that her tough pregnancies had, in a way, "prepared" her for what was to come. Mr Yeo said: "We are veterans already. Just bring it on."

So, immediately after Robby was diagnosed, the couple signed her up for therapy sessions. Madam Lee took courses, and Mr Yeo left his job in finance to have more time with the family.

Robby is currently studying at Grace Orchard School, a special-needs school. The biggest worry the couple have now is what will happen to her when they are no longer around.

Madam Lee said: "We wanted more kids after Robby, so that the siblings can share the burden in looking after her."

"At the end of it all, we still feel very blessed. Robby is healthy, she can walk and run, and she is not on medication.

"We have three beautiful children, and we are financially stable. Some couples may fall apart when they have a special-needs kid, but we are still together."

limyihan@sph.com.sg

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