Son's poor sight spurs doctor parents to set up support facility

SINGAPORE - When the iC2 PrepHouse, which helps and supports people with poor vision, opened last year, it marked a milestone in journey taken by Dr Audrey Looi and Dr Ang Beng Ti.

A journey that began when the eye specialist and her neurosurgeon husband found out that their son James, now 12, suffers from Stargardt's macular dystrophy.

It is a rare eye ailment that affects his central vision and there is no treatment for it.

Despite all their medical training, there was nothing they could do for their son medically, so they were determined "to help him overcome difficulties we knew he would face in school and in daily life".

"We looked around intensively (at support services for the vision impaired) for a few months, both locally and abroad. That's when we found a great difference in what was available here and elsewhere," said Dr Looi, who heads the Oculoplastic Service at the Singapore National Eye Centre.

What was available was far from adequate and was often provided on an ad hoc basis, with no good understanding of the child's needs, she said.

"As an ophthalmologist, I was disappointed that in contrast to the medical field, the standard in the social sector was not on a par with that of international standards. There was much that could be done to raise our standard of care for children with low vision," Dr Looi said, adding that Singapore is "sadly behind not only developed nations but also developing nations" in this area.

Patients who lose vision have little to fall back on in terms of support services, particularly children still in or entering the education system here, she said. Then they came across Madam Lee Lay Hong, who had "travelled this same journey 10 years ago with her then four-yearold daughter".

Said Dr Looi: "She had struggled with a rigid education system and principals who did not rise to the challenge of helping her child, who, other than having a visual impairment, was bright and had amazing potential."

Madam Lee, a teacher, furthered her training in Special Education for Low Vision in Sydney, Australia, and completed her master's degree.

She has since taken to teaching her daughter in Assistive Technology, Braille and basic Orientation and Mobility. Said Dr Looi: "Seeing the girl coping so well gave me and my husband confidence that James would be well supported in his own journey.

"So when Lay Hong asked me for help to set up a resource centre so that parents of children with low vision have better guidance and support, I readily said yes," Dr Looi said.

Specialised

iC2 PrepHouse opened last October at Jurong Point Shopping Centre and now has about 15 students.

As she had specialised in the field, Madam Lee became a trainer at the centre, which offers services such as braille learning, orientation, mobility and independent living skills, visual efficiency skills and assistive technology.

Setting up the centre and hiring certified trainers and administrators required significant expenditure.

"Our Board Directors do not receive any allowance. We keep our expenses as low as possible, but even then, it takes about half a million dollars to keep iC2 going," Dr Looi said.

"As we are a new charity with no previous track record, fund-raising has not been easy and we hope for greater awareness and acceptance as a bona fide charity."

iC2 PrepHouse is getting funds from the Tote Board and the Lee Foundation.

Added Dr Looi: "We hope for some support from the Ministry of Education as this is also about helping children with low vision receiving education in mainstream schools as much as it is about helping our children integrate into mainstream society, and preparing them for an independent and fulfilling future."

iC2 PrepHouse's fees are based on household income and it will accept referrals that satisfy criteria, including the World Health Organisation's criteria for low vision and referrals by an eye doctor or low vision specialist.

What is Stargardt's macular dystrophy?

Stargardt's macular dystrophy (SMD), also called fundus flavimaculatus, is characterised by the loss of central vision early in life.

It is an inherited disease passed on to children when both parents carry mutations of a gene associated with vitamin A processing in the eye and it affects about one in 8,000 to 10,000 people.

Named after German ophthalmologist Karl Stargardt, who discovered it in 1901, SMD causes the light-sensitive cells in the inner back of the eye (retina) to deteriorate, especially in the area of the macula, where fine focusing occurs.

Unfortunately, there is no treatment available.

How it is diagnosed?

The condition can be diagnosed by the yellow-white spots that appear in and around the macula.

Vision loss from SMD generally begins to show up within the first 20 years of a person's life, particularly in early childhood, but it is difficult for doctors to pinpoint exactly when retinal damage will occur or how fast it will progress. But peripheral vision is retained.

What are the signs and symptoms?

They include:

Difficulty reading and grey or black spots in the central vision.

Loss of vision that occurs gradually at first and affects both eyes.

Most people with SMD will have vision loss ranging from 20/100 to 20/400 by age 30 to 40.

juditht@sph.com.sg


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