Sunday Vibes

Madhya's Gift: Fighting for Malaysia's forgotten children

THERE'S never enough time in the day to do everything, and if Datuk Hartini Zainudin had her way, she'd want to do even more. As it is, she's walking a fine line between exhaustion and sheer bulldoggedness — a relentless drive to help as much as she can, for as long as she can.

She flounces into the café like a hurricane, looking almost impossibly cheery. But her weariness is unmistakable, etched deep into her eyes. 'You caught me on a bad day,' she admits with a wry smile before sinking into the chair opposite me.

It's been quite a coup to get Hartini to agree to meet me. Between fundraising, attending to the relentless avalanche of desperate pleas and juggling countless meetings, she has somehow managed to carve out time for this early morning catch-up. I've been following her for a while now, captivated by the stories she shares — heartbreaking accounts of desperate mothers and parents struggling to care for their children.

"I just paid back the second instalment of the burial cost to the friend who lent a grieving father whose 5-month-old baby died at the hospital after being refused treatment. RM700, the same amount as the hospital deposit the father didn't have, so he couldn't be admitted," she wrote in one such post. "The total burial cost was RM1,709. No one is screaming injustice or outrage?"

The heartbreaking reality of at-risk and marginalised children being denied the medical help they desperately need has fuelled Hartini's decision to launch a new non-governmental organisation called Madhya's Gift. This bold initiative is far from unfamiliar territory for the 62-year-old.

A passionate advocate for children's rights, she is renowned for her unwavering commitment to protecting and uplifting vulnerable communities. As the co-founder of Yayasan Chow Kit, a safe haven for at-risk children, she has spent her life ensuring that every child has access to safety, education and a nurturing environment.

With decades of experience in humanitarian work, Hartini is a force of nature — balancing advocacy, policy change and on-the-ground support. Her work goes beyond charity, addressing systemic issues and inspiring long-term solutions for the welfare of children and their families.

"How do you manage it all?" I ask, incredulous. She sighs. "I'm learning how to say 'no,'" she admits. The demands are endless — letters, proposals, urgent pleas — but the hardest part is deciding what to take on and what to let go.

"I can't please everyone. I need to commit to what I know I can do," she says simply. "I just told someone this morning, 'no'." Another sigh escapes her. "If I say 'yes', I have to show up — and that's a huge responsibility."

Whether it's scrambling to raise funds for parents who can't afford medical bills, trying to talk a terrified young girl out of aborting her baby or answering a desperate plea for diapers and milk, Hartini tackles each case head-on. As she puts it, she takes her responsibilities seriously.

INVISIBLE CHILDREN

The work is relentless, driven by the overwhelming needs she encounters daily — and the reason is deeply unsettling. Public healthcare in Malaysia may be subsidised for citizens, but migrants, refugees and undocumented individuals are excluded, burdened with crippling fees that render even basic medical care unattainable.

Even for Malaysians, access to proper healthcare is not guaranteed if they lack insurance. Hartini highlights this disparity: "This isn't just an issue for immigrants and the stateless. Many of our underserved communities, including the poor, struggle to afford healthcare. They are denied access simply because they lack insurance or citizenship."

According to her, Yayasan Chow Kit frequently receives desperate pleas for financial assistance to cover medical treatment for critically ill children. "The costs range from RM3,000 to RM1 million," she explains. "The average is around RM40,000 — an unimaginable sum for most of these families."

Her phone is constantly inundated with messages and calls begging for help. "Look, these are children. They're dying all around me. I had to do something."

Nearly 600 non-Malaysian children under five die every year, according to the Ministry of Health. Why? No one knows — the reasons are never documented. And that's just the official figure; the true toll remains hidden.

For the Orang Asli, child mortality is 11 times higher than the national average. Childhood malnutrition rates among Orang Asli children continue to be high and increasing, with 60 to 70 per cent of children found to be malnourished by 5 to 7 years of age. Indigenous children in Sabah and Sarawak are 1.7 times more likely to die than their peers from major ethnic groups.

Non-Malaysian mothers fare no better, with a maternal death rate three times higher than Malaysian mothers, underscoring a desperate need for targeted healthcare reforms.

It's not just about money. Policies, practices, and life itself stand in the way. Families struggle with no transport, no food, no income and the emotional strain of caring for surviving siblings.

"One mother walked two and a half hours to the hospital with her baby strapped to her back," she says quietly. "They rejected her three times."

Why?

"No money," she replies, her voice heavy.

Aghast, I press further. She sighs. "I told her I'd pay, but government hospitals don't accept online transfers. It has to be cash."

The baby didn't survive.

Non-citizen children, explains Hartini, face staggering barriers: deposits up to 10 times higher than those for Malaysian children for the same care. The costs are crippling, and the delays are deadly. Children's conditions deteriorate as families scramble to raise funds, leading to tragic, preventable fatalities.

"Once, two critically ill children needed help. We couldn't save both because we couldn't raise enough," she relates again, emphasising: "It takes a village — doctors, friends, strangers — working together to create a circle of care and hope around each child."

MADHYA'S STORY

When little Madhya entered her life, Hartini realised the pressing need for a structured system to assist children who lacked financial support or access to healthcare. It became her mission to ensure that help was available for the most vulnerable.

In 2018, she received a call from a doctor seeking assistance for an 11-month-old Afghan infant battling paediatric cancer. The child had been turned away by every government hospital, including the one where the doctor worked.

When Hartini met the family, she was struck by the infant's condition. "The child was completely grey," she recalls, her voice heavy with emotion. "You could see the suffering. For five months, the family had been desperately trying to get her into a hospital but failed. None of the hospitals would admit her because she was a refugee."

She managed to get the infant admitted by promising to cover the deposit, but the real battle was just beginning. The treatment plan required six to eight rounds of chemotherapy, each costing RM15,000. If successful, the child would go into remission. If not, she'd face the next hurdle: a bone marrow transplant, ideally from a family member. If no match was found, a costly bone marrow vaccine would be the final, uncertain option.

The expenses were staggering. Admission fees, transportation, hospital stays — it all added up. The family's struggles deepened when the father lost his job, leaving them without income. They juggled shifts caring for the sick child and their other children, scraping by with nothing.

Against all odds, Madhya defied her doctors' predictions. With the help of friends and well-wishers, she completed six rounds of chemotherapy and celebrated her first birthday — a milestone many thought impossible. But her fight was far from over. Soon after, she relapsed. A bone marrow transplant was her only hope, but no one in her family was a match.

While funds were being raised for Madhya, another tragedy unfolded in the same hospital. Austin, an 11-month-old boy from Myanmar, desperately needed a liver transplant. With Malaysian children prioritised for transplants and the high cost of the procedure, Austin's operation was delayed. He passed away before he could receive the care he needed.

"I had reached the end of myself and what I could humanly do," admits Hartini. "On one side, Madhya's funding seemed impossible. On the other, a child died."

A glimmer of hope emerged when Madhya and her family gained refugee status and relocated to Australia, where she could receive the medical care she needed. "It was bittersweet," she says quietly. "I was about to break the news that I couldn't do anything more when the news came. Madhya and her family could move to Australia. I was happy for them."

Madhya only lived a few more months. Shortly after her second birthday, despite medical intervention, she passed away in 2020. "Her body was so ravaged," she reflects. "All those months of waiting, the harsh treatments — she couldn't take it anymore. Perhaps things might have been different with early intervention."

MADHYA'S GIFT

The Covid-19 lockdowns illuminated a grim reality for underserved communities, migrants, the undocumented and the stateless, particularly when accessing critical medical care became nearly impossible. Hartini witnessed an alarming surge in preventable deaths, with harrowing stories underscoring the lack of support for these vulnerable communities.

"Children and babies were dying everywhere. There was nothing I could do about it," she recalls with deep anguish. "I have pictures of babies who died because their mothers couldn't be admitted to hospitals in time. It's heartbreaking — these families not only face unaffordable delivery charges but are then burdened with the cost of burying their child."

Her account paints a devastating picture of systemic neglect, leaving the most vulnerable to bear the brunt of the pandemic's impact.

Something needed to be done.

Drawing inspiration from little Madhya, Austin and countless other children who died needlessly, Hartini established Madhya's Gift — an initiative dedicated to providing at-risk children with access to essential medical care.

"When we first started as a programme under Yayasan Chow Kit, it was all about scrambling to pay the bills, one after the other," she recalls. "But then, we realised that an entire ecosystem of volunteers and doctors needed to be set up. It's not about money alone. It's about resources."

Madhya's Gift, shares Hartini, aims to transform the way care and support are provided to those in need. The initiative begins with a focus on maternal health, supporting mothers and children from pregnancy until the child turns two. This includes physical and mental health care for both mother and child, along with nutrition and public health education, ensuring families are well-equipped during these crucial early years. By starting at the foundation of life, Madhya's Gift seeks to create lasting change in the way health and well-being are approached.

She also emphasises the importance of early screening to prevent illnesses from becoming life-threatening. "The problem is that people are so poor that by the time they're admitted to hospital, they're already chronically ill," she explains. Early intervention reduces waiting times and significantly improves health outcomes, ensuring people get the care they need before it's too late.

Swift action is another cornerstone of Madhya's Gift. The initiative prioritises rapid diagnosis, clear treatment plans, financial support, strong hospital partnerships, and access to specialised care — all aimed at delivering timely, life-saving assistance. "Getting help fast can make all the difference," says Hartini.

Equally critical is ensuring proper follow-up after treatment. "Too often, once a child is discharged, there's no system in place to track their recovery or ongoing needs," she notes. "Follow-ups are essential to prevent relapses and ensure they continue to improve." To address this, Madhya's Gift provides transportation assistance, medication support and rehabilitation services, ensuring recovery is monitored and sustained.

At its heart, Madhya's Gift is about more than just medical care — it's about building a sustainable support system for everyone in need. From family support groups and skills training to legal aid, education and advocacy, the initiative intends to tackle multiple interconnected aspects of well-being, ensuring that no one is left behind.

But Hartini is quick to clarify a common misconception: "People often assume this is only for non-Malaysians, but they're wrong," she asserts. "If you're in need, whether you're a migrant or Malaysian, we'll help." Her message is clear — help is for everyone, without exception.

As our conversation winds down, a smiling, slight-built waitress approaches and greets Hartini with enthusiasm. The latter's face lights up instantly as she asks: "Are you doing okay? Are you well?" — her tone warm and maternal. After a brief exchange, she turns to me, her face glowing with joy.

As it turns out, Farah was once under Yayasan Chow Kit's care. "She's one of ours," Hartini says proudly, her eyes shining with happy tears. "I'm so happy to see her do so well."

On that poignant note, Hartini reflects on the transformative power of creating an ecosystem that uplifts underserved communities and changes the lives of young people and children. Madhya's Gift, she admits, is still a work in progress. Much remains to be done to establish a proper system that can consistently make a difference.

Yet amid the challenges, there are countless stories of children who have benefitted from Madhya's Gift. Hartini shares some of these heartwarming tales, each a testament to the initiative's profound impact. Despite the tragedies, it's deeply gratifying to see so many young lives transformed and given a chance to thrive.

Hartini exhales deeply, as if the weight of her responsibilities momentarily escapes her. As the chaotic swirl of the café fades into the background, she gathers herself, the flicker of that unyielding determination returning to her gaze.

"There's always more to do," she says softly, her voice steady now, despite the exhaustion that clings to her every word. "But I'll keep going, for as long as I can. For the ones who didn't get that chance."

In this quiet moment, you realise that her resilience, her refusal to quit, isn't just about the work — it's about honouring the memory of those lost too soon, like Madhya and Austin, and ensuring their stories continue to matter, one life at a time.

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