The journey of iC2 PrepHouse and their motivations in creating programmes to help children with low vision.
by A/Prof Ang Beng Ti and Dr Audrey Looi
A/Prof Ang Beng Ti is a clinician-scientist at the National Neuroscience Institute (NNI) in Singapore. He heads the Department of Neurosurgery at the Singapore General Hospital campus and co-leads the Neuro-Oncology Research Lab at the NNI which is focused on elucidating precision medicine approaches to the treatment of malignant glioma. Outside of his clinical and research activities, he devotes his efforts as a Board Director at iC2 PrepHouse, a charity aimed at providing support services for children with low vision so that they may function independently in a sighted society.
It was in 2010 which marked a major turning point for A/Prof Ang and his wife, Dr Audrey Looi, a senior consultant ophthalmologist at the Singapore National Eye Centre (SNEC). It was an otherwise normal Saturday morning and they had brought their then 8-yr-old son James to the centre to get his eyes checked. Both his older sister and the boy’s schoolteacher had mentioned that he was bringing books close up to his face to read so Dr Looi decided to arrange a quick eye test. She soon realized that something more serious was going on when she found that even after putting prescription lenses on her son, he struggled to read the eye chart.
She then ran a full eye examination and consulted her colleague, a paediatric ophthalmologist, to run an electro-retinography test, which is generally used to diagnose retinal disorders. After running through the test, her friend confirmed that James did not have a simple case of myopia; instead he had a form of retinal dystrophy for which no treatment was available. A/Prof Ang and Dr Looi were devastated by the finding, but at the same time they could not let their feelings show as they did not want to alarm the son. At the time, the boy just wanted to join his sister at the school fun fair. A visiting expert subsequently confirmed that James had Stargardt’s macular dystrophy, a genetic eye disorder that affects the retina and causes progressive vision loss. What made matters worse was that when they looked for support programs for James, they discovered that none was available to support children with low vision in mainstream schools. They had even considered leaving Singapore for countries that had more established support systems.
Serendipitously, whilst browsing at a store that sold low vision devices, Dr Looi picked up a brochure for a support group for parents whose children suffered from visual impairment. When she contacted the lady, who had set up the Beyond Vision support group, Mdm Lee Lay Hong, things began to turn around. Lay Hong, too, has a personal experience with low vision. Both her children have low vision from retinal dystrophy as well. Her journey started a decade earlier. To help her daughter then, she had obtained a Masters in Special Education (specializing in vision impairment) from the University of Newcastle, Sydney, Australia. She was kind and generous and the two ladies hit it off immediately. Lay Hong conducted specialized assessments to see how badly James’s vision was affected and introduced him to assistive technology such as video magnifiers to help him enlarge reading material. She went down to his school to talk to the teachers and the principal to explain how the school could help James learn in class. At the same time, she began teaching him Braille as well.
Indeed, Lay Hong had been helping children like James for a few years, going from home to home to provide customized assessment and instruction. Many families had expressed difficulty even paying for her transport fees, let alone a professional fee. Some could not afford the assistive devices recommended. Nevertheless, Lay Hong had a vision for setting up a school so that more children could gain access to proper guidance and instruction. She asked Dr Looi and A/Prof Ang if they could help. Audrey figured that, given the difficulties Lay Hong had shared with her, they would need to set up a charity, rather than just a school, so that needy parents would also have access to the specialized resources. But setting up a charity and making it a success was no small matter. Both Dr Looi and A/Prof Ang were busy in their demanding jobs and had concerns about their lack of knowledge and experience in the charity sector. However, the knowledge that James and children with low vision in Singapore would benefit tremendously gave them the courage to take the plunge.
Dr Looi approached her ex-Medical Director, Dr Vivian Balakrishnan, then the Minister of Community Development, to gain support from the National Council of Social Services (NCSS) for a charity to help children with low vision. With his positive encouragement and nod, the original team of Dr Looi, Lay Hong, and two others, Dr Wong Meng Ee and A/Prof Ang Beng Ti started the work to realize their vision and in 2012, iC2 PrepHouse opened its doors in Jurong Point shopping mall.
The center currently has six vision teachers, and so far, it has helped about 140 children. There are currently 80 active students at the moment.
The premise behind the charity is that children with low vision should eventually grow up to be fully included members of society and an important strategy is to make it possible for them to study and learn with other sighted children in mainstream schools.
A/Prof Ang and Dr. Looi believe that where possible, children with disabilities, not just visual disabilities, should receive mainstream education. “Given our situation now, we have done well as a nation and I think we do have to pull together as a nation to help all those with disabilities so that they can enjoy the prosperity that the rest of us take for granted.”
Their son James, who is now 18, is a prime example of how the correct instruction allows a child with low vision the chance to reach his full potential, both academically and socially. Despite his poor central vision, he is able to handle the International Baccalaureate curriculum at ACS Independent, has many friends in school, captains the track team, and plays his guitar. [APBN]
About the Authors
A/Prof Ang Beng Ti is a clinician-scientist at the National Neuroscience Institute (NNI) in Singapore.
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Dr Audrey Looi is a senior consultant ophthalmologist and medical director of Ava Eye Clinic at Royal Square@Novena.