When she was a toddler, she was eager to see how a fan functioned. As her parents switched on the fan, she leapt in excitement, which resulted in broken bones in her arms and legs.
That was nothing new for her parents as she has fractured her bones about 40 times over the past six years, caused by a rare genetic disorder called osteogenesis imperfecta, also known as brittle bone disease.
Despite her fragility, she is full of life. She goes on TikTok daily, singing nursery rhymes and other pop songs, besides trying out new filters.
Khayla is also interested in makeup and insisted that she had her hair coloured, in preparation for today’s press conference hosted by Batu Uban assemblyman, Kumaresan Aramugam.
“I can’t wait to go to school,” she told a group of bewildered reporters who saw her slumped over a wheelchair, singing the nursery rhyme “Twinkle Twinkle Little Star”.
Khayla, who lives in Brown Garden, Gelugor, was given chemotherapy when she was merely 30 days old. She had to continue with this treatment once every two months for three years after an attempt to strengthen her bones.
In February 2020, she went through a surgery at the Penang Hospital to have metal rods inserted into her legs so that she could stand up on her own. But it failed, forcing her to go under the knife again to remove the rods, her father, Imran Mohd Yusoff, 43, said.
He said they were then referred to an expert at the Gleneagles Hospital in Kuala Lumpur, which has had a high success rate in treating brittle bone disease cases like Khayla’s.
The surgery will cost over RM80,000, which would see extendable rods inserted into her limbs to allow Khayla to walk and use her hands with less worry of fracturing them.
But that kind of money is impossible for Imran to find. He lost his job as a security manager at the height of the pandemic.
Today, he helps his wife, Khairol Niza Zaffarullah Khan, 42, in her small bakery and catering business, earning only enough to put food on the table. They have two other schoolgoing children aged 18 and 19.
The couple is also forced to put Khayla on calcium-rich milk, which costs them RM157 a tin lasting six days. On top of that, they are required to inject Khayla with pamidronic acid, which is a drug used to treat osteoporosis in cancer patients.
Drugs alone cost RM800, while another RM300 is spent on diapers and wet wipes, as Khayla cannot use the toilet. Currently, the family receives RM350 monthly from the social welfare department.
“We are worried that she might lose the ability to walk again if the surgery is not done quickly,” Imran said.
Kumaresan, who has helped the family since Khayla was born, today pleaded to the public to donate as much as they can for her surgery.
Those who wish to help Khayla may drop a WhatsApp message on FMT’s Helpline at 019 3899839.