This, sadly, is the harsh reality faced by Azman Ahmad Bakri and Farahiah Ariffin, whose 13-year-old son Mikhael Azman was diagnosed with Prader-Willi Syndrome (PWS), a rare genetic disorder in Malaysia.

PWS causes those affected to constantly feel hungry and never satiated, 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.

“At first, I was in shock. We had never heard of this disease before. We had to accept there is no cure, and that our child is not ‘normal’. We have to move on and think about how we can plan for his future,” Azman, 49, told Bernama.

Farahiah, 37, shared that the biggest challenge is not just accepting her child’s condition but also dealing with societal misperceptions. “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 wellbeing.

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

At home, the family has installed a dual-key system: after meals, they rest on the second floor with the downstairs living room locked, preventing their child from entering the kitchen, thus avoiding uncontrolled eating.

To ensure Mikhael stays active, brisk walking and running are part of the family’s daily routine. Azman said he and his wife then take turns feeding Mikhael with a small spoon to help him limit his food intake and feel tired more quickly.

“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 added.

To raise awareness about PWS, Azman shares their experiences through his Instagram account, 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, 195 cases have been identified as of February, with 28 individuals having passed away.