Living with endless hunger: Couple shares their journey raising a child with PWS
Imagine feeling hungry while fasting. For a PWS patient, that hunger must be multiplied by ten, that is what he experiences 24 hours a day.
SHAH ALAM – A married couple has chosen not to keep a stock of food or have a refrigerator at home to protect the life of their son, who suffers from the rare Prader-Willi Syndrome (PWS).
Former media consultant Azman Ahmad Bakri, 49, said he and his wife, Farahiah Mohd Ariffin, 37, made the decision because their 14-year-old son Mikhael could not control his urge to eat.
He emphasised that the genetic condition left Mikhael feeling hungry 24 hours a day, even after eating, as his body was unable to process satiety signals like a normal child.
"Most PWS patients tend to look for food when the family is asleep and some sneak into the fridge. If there is a fridge, they will open it.
"We cannot keep a stock of food. A child with PWS will try to find it at night when awake," he said.
Previously, one of the videos showing Mikhael’s perseverance and determination, shared by Azman on TikTok @MikePWS, received 818,000 views and 32,500 likes.
Azman said PWS can be fatal because patients could not control extreme hunger and some have died due to complications from uncontrolled eating.
"Every day brings extraordinary challenges for our family, from managing food to ensuring Mikhael’s safety throughout the night," he added.
He further highlighted that Mikhael’s hunger was constant, forcing both parents to stay vigilant and sleep lightly each night.
"Imagine feeling hungry while fasting. For a PWS patient, that hunger must be multiplied by ten, that is what he experiences 24 hours a day," he said.
Azman said they shared their experiences on TikTok to raise awareness of PWS and help the public better understand the condition.
Although the account was new, many viewers have asked questions and shown interest in learning about the disorder.
He noted that the public was often confused about PWS, with some giving standard dietary advice, such as reducing carbohydrates or increasing protein.
However, Azman said videos showing Mikhael’s exercises and daily activities helped people understand why PWS patients needed to be physically active.
He added that Mikhael once weighed 72 kilogrammes but has successfully reduced to 45 kilogrammes through disciplined diet and exercise.
In the meantime, Azman urged other parents not to feel ashamed and to seek community support for children with rare conditions like PWS.
"Do not be embarrassed to find support groups, like I did with PWS Malaysia. They provide a lot of help, so we do not have to face these challenges alone," he added.
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