FAMILY SHARES CHALLENGES OF RAISING CHILD WITH PRADER-WILLI SYNDROME TO RAISE AWARENESS

By Syed Iylia Hariz Al-Qadri Syed Izman

KUALA LUMPUR, March 27 (Bernama) -- No parents are ever truly prepared to accept that their child has an incurable illness, let alone one that could be fatal.

However, this was the harsh reality faced by Azman Ahmad Bakri, 49, and Farahiah Mohd Ariffin, 37, when doctors diagnosed their 13-year-old son, Mikhael Azman, with Prader-Willi Syndrome (PWS), a rare genetic disorder in Malaysia.

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PWS causes those affected to constantly feel hungry and never satisfied, even after consuming large amounts of food.

This condition can lead to overeating (hyperphagia), which in turn increases the risk of severe obesity and serious illnesses such as diabetes, high blood pressure and heart problems, which can be fatal if not managed properly.

“At first, I was in shock. We had never heard of this disease before. We had to accept that there is no cure and that our child is not ‘normal’. So, we have to move on and think about how we can plan for his future,” said Azman during a recent interview with Bernama.

Meanwhile, Farahiah shared that the biggest challenge was not just accepting her child’s condition but also dealing with societal perceptions that lacked understanding of the situation.

“Our society, especially within the Malay community, is known for its high sense of courtesy. When we see a hungry child, our instinct is to offer food out of sympathy. But for my son, this can be harmful.

“There were times where people criticised us for limiting his food intake, and some even labelled us as cruel. The truth is, we’re not restricting him; we’re protecting him,” she said.

Despite the difficulties, Farahiah said their family remains disciplined in ensuring Mikhael’s well-being.

“We train Mikhael to eat only at specific times. At home, we don’t keep snacks or excess food supplies. Instead, we only store raw ingredients and warm water to prevent unsupervised eating,” she said.

When Bernama visited their home, it was observed that the family had installed a ‘dual-key’ system.

According to Azman, the family rests on the second floor after meals, and the dual-key system allows them to lock the door to the living room, preventing their child from entering the kitchen, thus avoiding uncontrolled hunger.

To ensure Mikhael stays active, brisk walking and running have become their family’s daily routine. Azman said that he and his wife take turns feeding Mikhael with a small spoon to help him tire quickly and stop eating.

“Now, Mikhael’s weight has dropped to 45kg. Previously, his weight could increase by up to 2kg in a single day if not controlled,” he said.

To raise awareness about PWS, Azman shares their experiences through his Instagram account @mikeazman, educating the public about the challenges and needs of children with the syndrome.

In Malaysia, PWS is classified as a rare disease, with a prevalence of one in every 15,000 people. According to the Prader-Willi Syndrome Association of Malaysia, as of February 2025, 195 cases have been identified, with 28 individuals having passed away.

-- BERNAMA