by Serene Leong on

His 4-month old baby was born blind.

He and his wife are worried how to raise their child and if he would develop other conditions that will affect his quality of life.

Their greatest fear is how their son will live and who would take care of him after they are gone.

At a loss, Redditor golden_pug put up a post on 7 July to ask for help.

“Baby born blind. Need help”

He wrote: “While I’m devastated, I need to prepare him for a life with blindness. Any help, experience with raising a blind child will be appreciated.”

An active reddit user, golden_pug told The Pride: “When I posted on Reddit, I knew that people would respond to it more logically than I would, and also we can crowdsource information.”

“At the same time, I wanted to find people suffering from similar conditions and other parents of kids with the same condition so that we can get connected.”

He explained that he and his wife are trying to connect with parents of visually handicapped children in Singapore but they cannot find parent support groups.

His son was diagnosed with Retinal Macular Dystrophy, a rare genetic eye disorder, and although he is still in the initial stages, doctors say the condition is unlikely to improve.

Redditors offer support and help

Over 100 redditors responded to golden_pug’s post in less than 24 hours.

Some offered useful information and referred him to organisations that could help, including Singapore Association Of The Visually Handicapped (SAVH), SG Enable, The Disabled People’s Association (DPA) and parent support groups at iC2 PrepHouse.

Some suggested asking for referrals from the hospital and seeking early intervention in planning for the child’s education.

“The medical social worker, having known the child’s medical condition, would be in a better situation to advise on how to navigate the social/medical assistance ecosystem and next steps to help you and your child,” Redditor etoro_ advised.

Another Redditor Jackker said: “Potential technologies and way of living would include: Screen readers, guide dogs, braille and text-to-speech technologies.”

Redditor zmng said: “Please seek more than one medical opinion and evaluate the treatment options available – I went through something similar recently and it turned out to be mis-diagnosed. Good luck, stay strong!”

Tictacc89 said: “Sg is more inclusive compared to a decade ago so hopefully you will have a supportive community around you. If you face difficulties outside your means, you should approach your MP for help!”

In addition, several spoke of their own experiences living with blindness.

Redditor je97 shared that he too was born with visual disability and that with his parents’ devotion and support, he managed to attend a regular school for nine years, complete his education at a school for the visually handicapped, and is now midway through his Masters in International Law.

“The most important piece of advice I could give you is not to allow your child’s blindness to affect your expectations of them; give them all the same opportunities, fight for them when things aren’t right (because things will go wrong), make sure they have the best foundations you can give them,” he said.

Others provided moral support through words of encouragement. They pointed out that people with disabilities still have great potential to contribute to society and have a good quality of life.

“Your child still has the world ahead of them. Blind people are still capable, intelligent and can do so much, especially with modern technology such as text to speech,” Redditor mantolwen said.

Another Redditor, Administrator-Reddit, added: “With you and your wife’s love and support, your son will have a chance to succeed in life as long as he has hope and perseverance to carry him through. Good luck and I wish your family happiness.”

Many also reminded golden_pug to take care of himself as he cannot take care of his baby if he is not well.

In response, he told The Pride: “I am quite uplifted by their messages. The most encouraging thing is the number of resources that they have dug up for me, both in Singapore and overseas.”

While this is just the beginning of their journey, golden_pug said he is thankful for everyone who came forward to help, whether providing moral support or information. He told The Pride that he is most grateful for his wife, who is his pillar of support.

“It’s a tough time for us, we have to deal with it as best as we can. At the end of the day, it’s a fact that we can’t change. We will be sad, but as parents we will provide the best that we can for our kid.”

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