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A new addition to a family is often an emotional roller-coaster for an older sibling.

The responsibility of being an older kor kor or jie jie; the fear of being passed over for attention; coupled with the suspense of waiting for your younger sibling to talk and run around so that you finally have a companion to play with.

Ong Yi Zhe, 17, is still waiting for his brother Yi Hong to talk to him.

Yi Hong is 14.

As a toddler, Yi Hong was diagnosed with global development delay and low muscle tone.

His brother Yi Zhe, a River Valley High School student, tells The Pride: “He’s very much like a baby because his brain is not developed in proportion to his age.”

“My parents could tell he was different when he was born.”

Yi Hong, who attends Cerebral Palsy Alliance Singapore School (CPASS), is non-verbal and dependent on his family and their domestic helper. They also get daily visits from their aunt who lives two blocks away in their housing estate.

The boys’ aunt, 68-year-old Maggie Lee, accompanies Yi Hong to and from class on the school bus and stays with him throughout the day.

Due to his condition, the 14-year-old needs help with daily activities like showering and eating. He can walk on his own but requires constant supervision.

At home, Yi Hong mostly entertains himself with YouTube videos, television programmes or children’s books. Yi Zhe is unable to have conversations with his brother, much less unable to play any sports or have other activities together. Despite that, he tries his best to interact with Yi Hong.

“Usually, I just sit next to him while he’s reading, and he will point at pictures to show me.”

Life of a sibling of a PWSN

The Ong family during Chinese New Year in January 2023. Image source: Ong Yi Zhe

When he was younger, Yi Zhe thought his brother was “unlucky”.

“I would wonder why he has to be different from us—he couldn’t talk to me or play with me.”

Yi Hong would snatch his toys or electronic devices away, causing him to feel frustrated with his younger sibling. But as he grew older, Yi Zhe began to understand his brother’s condition. Today, he more patient with him.

“I realised that he didn’t choose to have this condition. Now, he feels normal to me.”

Having someone with special needs means there are some specific difficulties when the family goes out.

Explains Yi Zhe: “We cannot go to certain places or do certain activities like hiking because he cannot walk very far.”

For the Ong family, safety is their priority whenever they plan outings with Yi Hong. As Yi Hong is unable to walk long distances or do more strenuous activities, the family doesn’t venture out to explore less accessible places.

Apart from travel concerns, Yi Hong also has dietary restrictions.

“He doesn’t have too much fried food because his immunity is lower than average. He has to eat soft food because he can’t chew anything too hard.”

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The boys’ parents, Ong Chee Kiong, 50, and Ann Lee, 49, are both civil servants. Due to their busy work schedules, they are often unable to spend much time with their sons.

However, parents being parents, they often do things for their children discreetly.

At home, they cook dishes that are suitable for Yi Hong. When they go out, they always plan the location and dining options beforehand to ensure that it is accessible to Yi Hong and there is food suitable for him.

The family also has to deal with curious stares when they go out.

Says Yi Zhe: “When we go out, people think my brother is weird. It makes me feel sad that others treat him differently.”

Yi Hong tends to get excited on public transport and expresses it through shouting, clapping his hands and jumping. Occasionally, he also gets handsy when he gets excited, which can lead to awkward situations when he ends up grabbing strangers on the train or the bus.

To prevent such misunderstandings, the family has to constantly keep Yi Hong within reach and not let him wander off.

Being in his own world most of the time, Yi Hong does not sense how others react to him. But Yi Zhe, on the other hand, often gets frustrated over how people glance at him or treat him in public.

“People know so little about rare conditions,” says Yi Zhe: “my brother is very innocent; he does not understand what is happening.”

Volunteering at Rare Diseases Singapore

Cerebral Palsy Alliance Singapore School
(Left) The brothers at the Purple Parade when they were younger, and them at the parade again in 2022. Image source: Ong Yi Zhe

As a person with a rare disorder, Yi Hong has been a beneficiary of Rare Diseases Society Singapore (RDSS) since he was a young child.

But RDSS isn’t just for its beneficiaries. Caregivers also get support. It is there that Yi Zhe found his own support, in an unofficial “siblings of those with special needs” group.

Whenever RDSS organises social activities for beneficiaries and their families, these siblings would often meet to talk about their lives and challenges.

Yi Zhe says: “We form support systems with each other so that we won’t feel alone.”

“Most support comes from knowing others who have family members with special needs.”

Many of them have even become friends, hanging out outside of RDSS official events!

Yi Zhe (second from right) with the siblings’ group at a recent hangout session.
Yi Zhe (second from right) with the siblings’ group at a recent hangout session. Image source: Ong Yi Zhe

In 2021, at the encouragement of several sibling supporters, Yi Zhe joined RDSS officially as a volunteer.

“We collaborate with schools to educate and raise awareness on what rare disorders are,” Yi Zhe explains. Working mostly behind the scenes, Yi Zhe is part of the planning team that plans and organises events.

In April 2022, as part of the youth division at RDSS, he volunteered at an Art Connect event, which engages individuals with special needs through arts and crafts, music and more.

These days, any chance he gets, Yi Zhe tries to raise awareness about rare disorders.

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He even sang at the Purple Parade in October 2022 as part of a performance group, with his brother in the audience!

When people learn to interact with PWSNs, families like Yi Zhe’s will be less isolated, and family members and caregivers of those with rare disorders will feel less alone.

Yi Zhe also hopes that all these efforts to raise awareness will pay off.

“Hopefully with more awareness, people will be less judge-y towards those with rare disorders.”

Yi Zhe’s hope for his brother

Yi Zhe’s hope for his brother
Even from young, Yi Zhe keeps his brother close to him. Image source: Ong Yi Zhe

When I ask Yi Zhe what he wants, his answer is simple: To have a proper conversation with his brother.

Recalling a 2019 trip to S.E.A. Aquarium, Yi Zhe says with a smile: “It was one of the rare times we got to go out to a special place. He was very curious in all the fishes and sea creatures.”

He says: “I hope that one day he can communicate with us, speak to us so we know what he wants and needs.”

Yi Zhe values his relationship with his brother and still hopes that his condition will be treatable in the future.

“Even though it is not very possible now, I hope he can one day be like the rest of us,” he says quietly.

Raising funds for Rare Disorders Society (Singapore)

Yi Hong is a beneficiary of Rare Disorders Society Singapore (RDSS), a charity that advocates for equity and empowerment for people with rare disorders to improve their quality of life.

You can support families like Yi Hong’s by attending the carnival at the upcoming Carry Hope 2023 event organised by Rare Disorders Society Singapore (RDSS) on Sunday (Feb 26) at the 100plus Promenade @Singapore Sports Hub. Carry Hope 2023 aims to raise awareness and funds for those living with chronic conditions and their families.

How the funds will aid RDSS’ beneficiaries.
How the funds will aid RDSS’ beneficiaries. Image source: Rare Disorders Society (Singapore)

Do also contribute to their fundraiser, which ends on April 30.

All proceeds from the carnival and fundraiser goes to RDSS and its beneficiaries.

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