Despite the challenges of Lesch-Nyhan syndrome, Wei Yang finds joy in simple pleasures like watching TV, using his iPad and playing with toys that strengthen his hand muscles. (Dinesh Kumar Maganathan @ FMT Lifestyle)PUCHONG: Mornings begin much in the same way for Kong Wei Yang. While most teens his age are getting ready for school, the 15-year-old depends entirely on his parents to help him through the simplest parts of the day.Still weary from another interrupted night's sleep, they carry him to the toilet for his morning routine, including a diaper change.
After freshening up, his 51-year-old father carefully carries him downstairs for breakfast.His favourite? A row of Danish biscuit tins lining a nearby cupboard quietly hints at the daily ritual.No sooner is Wei Yang settled into his wheelchair than his father, contractor Kong Hean Fui, begins fastening body and hand restraints."If we don't do this, he'll bite his fingers until they bleed," his mother, Wong Yin Teng, told FMT Lifestyle."That's why he also wears a mouth guard and two face masks to stop him from biting his lips. He can't control it."Wei Yang has a rare genetic disorder called Lesch-Nyhan syndrome, which affects roughly one in 380,000 people and occurs almost exclusively in boys.It prevents the body from properly recycling purines, leading to excess uric acid, neurological impairment, uncontrollable muscle contractions, and compulsive self-injurious behaviour.Wei Yang's parents hope to raise RM250,000 for a deep-brain stimulation procedure they believe could significantly improve his quality of life.
(Dinesh Kumar Maganathan @ FMT Lifestyle)"We noticed Wei Yang wasn't reaching the developmental milestones when he was about eight months old. We knew something wasn't right," recalled Wong, a full-time homemaker."The doctors kept telling us not to worry, saying he might catch up after he turned two. But he didn't."The uncertainty sent the family on a years-long search for answers.
They tried acupuncture, physiotherapy, oxygen therapy, massages, traditional Chinese medicine, shamans, and even travelled to distant temples after midnight for special prayers."As parents, we had no choice. We tried everything in the hope of curing him," said Kong, whose construction business has struggled since the pandemic.When Wei Yang turned eight, doctors finally dia…
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