SINGAPORE: Would you want a second child, knowing that your first-born has a rare genetic condition? Are you worried about your baby accepting his blindness when he comes of age?
And why do you want him to become a lawyer?
These were some of the questions that readers posed to the Koh family — Eric, Wei Shi and 15-month-old Elliot — in an Ask Me Anything session hosted via CNA Insider’s Instagram account.
It was part of an overwhelming response to their story published on Jun 13, about their journey raising Elliot after they discovered at the age of four months that he was born blind.
Several commenters on CNA’s Facebook page, for example, shared stories of their own visually impaired children or of acquaintances leading full lives, while many called the family “inspiring” or “amazing”.
Others also suggested local organisations the Kohs could reach out to for help.
Some “enthusiastic” people also messaged Wei Shi via Instagram to suggest traditional remedies or food for Elliot to improve his condition. “We’re very appreciative of that,” she said. “But we know they won’t work."
The most heart-warming messages she received via Instagram were from two different families with visually impaired children aged four and five, asking to connect with her family.
Before they read the story, she said, they had not known any other family with children who were visually impaired. She has since included both families in the unofficial support-group chat she formed with other parents of visually impaired children.
“That’s great because we can still remember the helplessness we first felt — the clueless feeling of not knowing how to help my baby,” she said.
Elliot is now getting help from iC2 Prephouse, which teaches children who have extreme visual impairments — up to the age of 22 — how to live independently and cope in mainstream schools.
In another development that surprised and gratified the Kohs, medical professionals have responded to their story by offering to review Elliot’s case. These include representatives from the National University Hospital and an ophthalmologist from the United Kingdom’s Moorfields Eye Hospital.
WATCH: Raising a blind baby and the lessons we've learnt from it (12:02)
These are offers that the couple are happy to take up. “While we’re fairly confident we know his condition, it always helps to have a second opinion and a different set of eyes to look into it,” said Eric.
He has sent out a group email thanking them and attaching Elliot’s genetic report for their reference. “We aren’t hoping for a miracle cure,” he said. “But as technology improves, things can change. Hopefully, something good comes out of it.”
NOT NECESSARILY A LAWYER
During the Instagram Ask Me Anything session, among the things CNA Insider followers wanted to know more about were Elliot’s quirks and personality. (A bit impatient like his father and a sweet young thing like his mother, said Wei Shi.)
On whether they plan to have a second child, she said they would like a bigger family, but they do not know at this point. “The answer depends on many factors, such as his development or the resources he’ll get (as a visually impaired person),” she said in her response.
As to whether they worry about Elliot accepting his blindness when he gets older, they said they will do their best. “I think we’ll be prepared for that day and be there to answer all his questions and support him as much as we can,” said Wei Shi.
Eric also clarified that he was quipping in the video when he expressed hope that Elliot will become a lawyer. But there was some meaning behind it.
“Law is something that visually impaired people can do effectively, because it involves working with a lot of documentation that can be read via modern technology like text-to-speech,” he said. “Visually impaired people aren’t cognitively impaired — this is something that’s possible for them.
“But … we’ll support him in whatever he wants to do. And we hope he can find excellence in whatever job he wants to do.”
Some of the Instagram messages Wei Shi received were from lawyers encouraging the family.
There was also a lawyer who wrote to Elliot in the voice of his nine-month-old baby, jokingly advising against becoming a lawyer because “Daddy and Mummy (will) want to spend more time with you”.
But he also mentioned that he has a colleague who is visually impaired and who passed the Bar with the help of friends. “He said it can be done, and we were very happy to hear that,” said Eric.
Ultimately, the Kohs stressed that they were happy and hoped that they will not be seen as pitiful figures.
“It wasn’t unpleasant to have Elliot, it was just unexpected,” said Eric, referring to a post Wei Shi made on Instagram looking back on Elliot’s first year. “We really enjoy him as a baby, and we enjoy the process of being parents.
“He’s a happy baby.”
Wei Shi had created the family’s Instagram account to document Elliot’s life and milestones. And in the days after CNA Insider published their story, their account received about 50 direct messages. Their follower count also more than doubled.
“My wife joked that we’d only get about 200 more followers,” said Eric. “In the end, we got more than 2,000.”
They have more than 3,800 followers now, up from 1,500 or so previously.
While they said the numbers “don’t matter to them”, they are nonetheless grateful for the expanded reach, as it would allow more people to be aware of the capabilities of the visually impaired in Singapore and the challenges facing them.
“We also want to … stay connected with parents with visually impaired children or those with special needs who’ve been reaching out to us,” said Wei Shi. “We’ll … manage the account for as long as people want to support him.”