5-year-old with brittle bone disease needs RM40,000 for surgery

KUALA LUMPUR: A 5-year old girl with brittle bone disease needs RM40,000 for surgery.

Nur Dhuha Sofia Mohammad Farid was diagnosed with osteogenesis imperfecta and left tibia deformity. The condition is also known as brittle bone disease.

Dhuha's mother, Siti Salwa Abdul Wahab, 29, said her daughter was born with the genetic disorder.

"When I was four months' pregnant with Dhuha, scans showed that her bone structure was abnormal. At eight months, another scan revealed that the bones in many parts of her body were fractured."

Consultant orthopaedic surgeon Dr Abdul Razak Muhamad from Gleneagles Hospital Kuala Lumpur said osteogenesis imperfecta is an inherited bone disorder that is present at birth and the disease causes bone fractures that eventually grow more and more bent, especially the thigh bone.

Siti Salwa said she had to keep a close watch on her daughter as even prolonged standing and sitting can cause her bones to break.

"Dhuha turned 5 recently, but we cannot send her to kindergarten because of her illness. So her older brother teaches her sometimes.

"Sometimes my daughter wants to wear shoes, but I have to say no because of her brittle bone disease. We carry her and never let her walk," she said.

She said Dhuha gets treatment at Taiping Hospital and Penang Hospital and is taken for health check-ups every two months, sometimes monthly, depending on her condition.

Dhuha had her first surgery on both thighs and the right leg in 2020. The operation allowed Dhuha's fractured bones to heal and reduced the risks of brittle bone disease. But she still cannot walk and can only crawl.

"The surgery in 2020 stabilised her fractured bones and reduced the risks of brittle bone disease, but she needs another surgery as soon as possible for her left leg," said Siti Salwa.

"I am very sad that my daughter can't be like other children. I hope she heals quickly and can grow up normally, walking and running like other 5-year-olds."

She said her husband, Muhammad Farid Li, 32, is a factory worker and earns RM1,800 a month, so they cannot afford the surgery.

"Government organisations like the Social Welfare Department and Baitulmal have helped us with necessities for Dhuha, such as milk and diapers, and sometimes paid for treatment.

"Two years after her first surgery, the doctor is urging for another surgery to correct a deformity Dhuha has and for telescopic nail insertion in the left leg (left tibia) to stabilise her left lower limb.

"I believe this operation will succeed and get rid of her pain and fractures so that she can be healthy and walk like other children."

Those who wish to help can send donations via cheques made payable to the Media Prima-NSTP Humanitarian Fund to Group Corporate Communications Department, Media Prima Bhd, Level 4, Anjung Riong, Balai Berita, 31, Jalan Riong, 59100 Bangsar, Kuala Lumpur, with the patient's name written on the reverse side.

Donations can also be chanelled to the fund's Maybank current account 5141 0532 3170, indicating the patient's name on the recipients' reference or other payment details section.

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