For three families who broke our viewers' hearts, an outpouring of help

For three families who broke our viewers' hearts, an outpouring of help

Their stories about their struggle against rare disabilities struck a chord with readers and viewers, who responded with offers of help of various kinds, requests to meet them and surprise gifts.

OTRD We are family follow-up
Ms Nur Zakiah Jaafar and her son Ahmad.

SINGAPORE: All they wanted was awareness – of how a mother with a rare disorder can look after her son, of the struggles faced by parents of children with disabilities, and of the realities of growing up with special needs.

But the three families who agreed to open up their lives to the programme On The Red Dot got more than they ever expected.

Hundreds of people have responded to their stories, featured in CNA Insider’s videos and articles, with offers of help of various kinds, requests to meet them and surprise gifts.

READ AND WATCH: She loses her fingers and toes, but not the will to fight for her son

READ AND WATCH: Love, unconditionally: Life as a mum raising 3 children with special needs

READ AND WATCH: The struggle to bring up Tamimi, a 13-year-old with brittle bone disease

The families’ efforts to do their best under challenging circumstances struck a chord with readers and viewers online, who wrote in offering items such as stationery, services such as a daily tingkat delivery and even a sponsored trip overseas.

Singaporeans also opened up their wallets by donating tens of thousands of dollars so far.

More than the money, however, the “kind words and encouragement” from the public has been touching, as Ms Nur Zakiah Jaafar – one of those profiled – said. “The response lifted my spirits,” professed the 34-year-old.

To Ms Zakiah, every day is a gift, so she tries not to be ungrateful, despite "missing a few parts".

‘IF WE DON’T HELP, WHO WILL?’

Ms Zakiah lives with Buerger's Disease, an incurable disease of the arteries and veins in the arms and legs. It causes inflammation of the blood vessels, eventually damages skin tissues and may lead to gangrene.

She has lost her toes and all her fingers, except her thumbs, and requires the help of her 68-year-old mother for her daily routine. But despite the constant pain, she is determined to be there for six-year-old son first.

And that motherly love led to an outpouring of support for the family.

“Her story was moving because of her resolve to try and be a present and dedicated mother in spite of her debilitating physical condition,” said Ms Dalvinder Kaur.

“It was a sombre reminder to many of us to firstly appreciate the blessings and stability – no matter how small – we enjoy.”

Explaining why she wanted to donate, Ms Kaur added: “It was heartening to see how Singaporeans learning of her plight on social media were rallying to support her and her family. It made me feel like getting involved in helping.”

Nur Zakiah Jaafer, her son and her mother huddling after his graduation ceremony and performance.
Family huddle after Ahmad's pre-school graduation ceremony and performance.

Ms Zakiah was not in any particular need, as she was “coping well with medical support and subsidies” from government agencies and benefactors such as the Islamic Religious Council of Singapore (Muis).

One to two years ago, she also raised about S$40,000 from crowdfunding, which she put into a fixed deposit for her son’s future. But she has since “dipped into it a bit”.

And with the overwhelming response from people who got to know her story recently, she created a new crowdfunding page. In just over a week, it has raised more than S$23,000 from about 460 backers.

The surprised single mother said: “We’re touched that the public came together for us. We’re nobodies, but Singaporeans came out to help us.”

Mr Edgar Chua, one of those who wrote in to offer such help, said that her story “broke (his) heart”. “She's Singaporean. And if we don't help her, who will?” he added.

Ms Zakiah, who said she will save most of the money for her son’s future education, admitted that it would make their financial situation “a bit less stressful”.

Ms Nur Zakiah Jaafar going through a learning exercise with her son Ahmad.
Doing a learning exercise together.

RAW BUT NO REGRETS

For Mdm Carolyn Quek Su Lin, who has two boys suffering from a rare immune deficiency and one son with autism, the public’s response to her story has given her “inner peace and relief”.

“I’m not someone who really accepts praises because I’m self-critical,” said the 45-year-old. “(But) to have so much … affirmation, it gives me so much comfort that, yes, I’m on the right track.”

She had thought hard about whether to share her family’s story, as she did not know how the “keyboard warriors” would react. But she was hoping to send the message that people should be “inclusive without judgement”.

While her husband, Mr Teo M K, was supportive, he did not want to appear on the show.

Two of Mdm Carolyn Quek's boys suffer from a rare immune deficiency, and one son has autism.
Two of Mdm Carolyn Quek's boys suffer from a rare immune deficiency, and one son has autism.

His wife has no regrets, however, that the cameras show a very real – and raw – picture of how she struggles to raise her children, especially when she loses her temper with her eldest, Lucas.

“There’s nothing to hide. I’m objective in saying so. I’m not the worst off, not the best, but I’m just human,” she said.

That intimate insight was something that ABR Holdings executive chairman Keith Chua appreciated. “The Teo family’s willingness to candidly share their personal story helps all of us in Singapore better understand the unique challenges some families face,” he said.

“The daily care Carolyn gives to her children and family shows a mother’s love in action. And (with) her … admitting that she, too, has had to learn at each stage, this must be helpful to others caring for loved ones.”

The Teo family meets ABR Holdings executive chairman Keith Chua.
The Teo family meets Mr Keith Chua.

His company has offered to sponsor the family for a trip to Australia, which Mdm Quek cited on the show as a place she could only dream of showing her children.

Mr Chua said that granting this holiday wish was part of his company’s “corporate purpose to practise and encourage caring and sharing”. He added: “We all need to step forward and help each other whenever we find opportunity.”

Others have posted various offers of help online, such as art therapy and free Chinese tuition, which their mother will try to respond to and fit into her boys’ schedules.

For now, she has agreed to ABR’s offer, though no plans have been firmed up. “I was so shocked. It was very overwhelming,” she said of her reaction.

Keith Chua, daughter Sharon (left) and the Teo family posing at the Hello Kitty Garden Cafe.
Mr Chua, his daughter Sharon (left) and the Teo family posing for a photo at the Hello Kitty Garden Cafe.

TRUE FEELINGS SHARED

For Mdm Sarina Siregar, being part of this On The Red Dot series gave her something she never fully had while raising her son Tamimi, who has brittle bone disease.

“I was able to know about his feelings when they interviewed him. Because all this while, he hid his feelings about how he was treated, which was not like other students,” said his mother.

“He felt that he was not accepted, not given a chance to do what he can do.”

Getting people to understand how he was feeling was the reason she asked her 13-year-old son whether he would agree to appear on the show, and told him it was “a good idea”.

OTRD We are the Pohan family main

A reader who has been coping for the past 28 years with the same incurable condition, where the bones are deformed and break easily, said his story “struck a resonant chord”.

“I know school can be a daunting experience, and children may be unkind. However, integration through reasonable accommodation is essential for Tamimi to integrate with society in the long run,” she said.

“The point about the family having to (learn by) trial and error felt very real to me; if my family and I had people to share their experiences, perhaps there could’ve been fewer trials and, following that, perhaps fewer errors.”

Others have also reached out to the family by, for example, offering to buy textbooks and schoolbags. And the biggest worry Tamimi’s parents have had is over for now.

Tamimi Pohan needs wheelchair-accessible transport like vans or London cabs.
Tamimi needs wheelchair-accessible transport like London cabs.

His crowdfunding page set up last year by Mdm Siregar to pay mainly for his transport expenses has seen donations surge past the S$75,000 mark, with well over two-thirds coming in the past month following his story.

The campaign has now been ended. “The funds kept growing. It was so unexpected,” she said. “Thank you so much to the public who were willing to help us.”

All the offers they have received, big or small, have come as a surprise – including an invitation to a PSLE results party a parent was throwing for her daughter. “We did go there to let Tamimi enjoy,” said Mdm Siregar.

Things are especially looking up for him in his new secondary school, which is better able to cater for his needs, she added.

The Pohan family never had a family portrait until they went to the photo-shoot to get one.
From left: Dad Muliadi Pohan, Tamimi, sister Tiurma and Mdm Siregar.

BUILDING TRUST TO TELL THEIR STORIES

It was the On The Red Dot team who created the opportunity for Tamimi to give a graduation speech to his primary school on how he felt as a pupil with disability.

Building that kind of trust – for him to do something he had not done before – can be a “complex process” in documentary-making, said series producer Mak C K. Given the timelines of television production, however, the first meeting is “paramount”.

“The producers and I visited each subject and his/her family together to share very openly about the project – the premise, how we work, the size of the crew, the shoot schedule, expectations of their commitment to the project,” he said.

“Most importantly, we explained the intention of the series, which is to celebrate families overcoming extraordinary challenges that are often invisible even to those around them.”

Tamimi Pohan giving a speech to his primary school on how he felt as pupil with a disability.
Tamimi reading his speech on stage.

There was no getting around the fact that such an “observational” documentary can be invasive, “especially when children and intimate family moments are involved”, he admitted.

“So the producers had to toe the line between making the families feel safe and creating a powerful documentary. They had to manage this through constant communication before, during and after filming sessions,” said Mr Mak.

“This involved liaising with a myriad of people, from friends and neighbours to hospital management personnel and school principals. It takes a team to pull this off seamlessly.”

It was the production team’s responsibility to show viewers how, despite dark moments, “the light in these families was bright”.

Mdm Carolyn Quek has two boys suffering from a rare immune deficiency and one son with autism.
Mdm Quek and her three boys.

“While it isn’t easy to be confronted face to face with these extremely harrowing real-life circumstances, the privilege to witness first-hand how these families transcend them will always stay with me,” he added.

“While the primary narrators are the parents, the children … are the ones who intrigue me the most – their inner worlds as they live through dark times. I'll be curious to find out how they are in 10 years.”

That future is something Ms Zakiah is doing her best to secure for her son Ahmad – with more outside help now.

Summing up her appreciation, she wrote on her page: “It fills me with great strength to continue fighting against the disease, for my mum and my son.”

Nur Zakiah Jaafar, mum Musliah Ahmad and son Ahmad doing their best under challenging circumstances.
Doing their best under challenging circumstances.

Source: CNA/dp

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