The 11-year-old has a positive take on life, constantly makes his parents laugh and cheekily enjoys “disturbing his mother”.
But, to the rest of the world, he looks and acts different – and that’s because Khallish has Williams Syndrome.
Classified as a rare disease in Malaysia, this is a genetic condition characterised by medical problems such as cardiovascular disease, developmental delays and learning challenges.
Khallish was two years old when the couple received the devastating diagnosis. Speaking with FMT Lifestyle, the couple recalled that they had rushed him to the hospital when he developed a high fever.
There, the doctor detected a heart murmur and referred Khallish to the Universiti Kebangsaan Malaysia’s Specialist Children’s Hospital (HPPK UKM). Following a fluorescence in situ hybridization (FISH) test, Khallish was diagnosed with Williams Syndrome. The couple were stunned.
Since Khallish was their first child, they hadn’t noticed anything amiss about their son, although looking back, they realise he started talking and writing much later than other kids his age. They also didn’t think much about his prominent lips or sensitivity to sound.
Speaking about his son’s diagnosis, Khairul, 41, who is self-employed, said: “I accepted it and immediately thought about what I needed to do next to take care of him.”
But for Siti, 39, her son’s diagnosis was hard to accept.
“I was in denial during the first two years. But there was a doctor who asked me, ‘why are you not sending him for occupational therapy? You are taking away his right’,” she said.
It made the homemaker realise that she had to put her grief aside for Khallish’s sake. The boy now attends occupational therapy, physiotherapy and has been enrolled in an early intervention programme.
Rare and chosen
Nevertheless, Kamarul shared that he feels fortunate to be Khallish’s father. “I’m the chosen one. To be the dad to this special kid,” Kamarul said.
During the interview, Khallish was seen affectionately cuddling his mother and responding to his father’s questions, occasionally making his father burst into laughter. “He’s very entertaining. A little clown,” Siti said warmly.
“He’s got so much love to share,” chimed Khairul.
Khallish, the couple added, finds lion dance performances fascinating. After only previously watching it online, the couple took their son for his first performance this year. He was so overwhelmed by the experience, he cried.
Although his father brought noise-cancelling earphones for him, Khallish refused to wear them. He wanted to soak up the ear-splitting sounds of the performance instead. The couple even took their son to watch a particular lion dance troupe perform at various locations.
Khallish is currently part of the Program Pendidikan Khas Integrasi at Sekolah Kebangsaan Sri Kelana. While he is familiar with numbers, he can’t read well. He can, however, recognise the alphabet.
“For example, he likes antique fans, so if he wants to search online, he will type ‘f-a-n’. He doesn’t know that it stands for the word ‘fan’,” Siti said, while Khairul added that he has a good memory.
Khallish, who was born with a hole in his heart, now needs to undergo open–heart surgery. Understandably, the couple is anxious.
They also worry no end about Khallish’s future: who would care for him when they are no longer around? Grateful for the present, they have learned to celebrate the little milestones in their son’s life.
“For a normal child, going to the toilet is easy. But for us, it took three to four years to train him. It’s a big achievement for us,” said Siti.
As parents of a special needs kid, the couple said it was their hope that parents teach their kids to be more tolerant towards those who are different – and more importantly, to get to know them.
“Parents always teach their kids to be successful. How about teaching your children to be friends with those who don’t have any friends? And it’s not necessarily those with special needs, it’s even those who sit alone in school,” Siti said.