JOHOR BARU: Noor Suraya Saidin has not had a full night's sleep since the birth of her youngest daughter 13 years ago.
Her daughter Noor Qaira Danisah suffers from a rare condition known as Rett Syndrome, a genetic disorder that severely affects cognitive and physical development.
The 13-year-old suffers from more than 10 seizures a day, requiring around-the-clock care.
Her condition has left her immobile, unable to move her limbs and her spine is progressively curving.
"She started having seizures because she lacked oxygen during birth," said her mother Noor Suraya, 39.
"Now, she's like a baby, completely dependent on us for everything. Despite medication, the seizures persist, she said when met at her house at the Bandar Uda Utama People's Housing Project.
"Every day is a challenge. It's heartbreaking to watch my child suffer like this, but I can't give up. She needs me."
Having left her job to care for Noor Qaira full-time, Noor Suraya now works as a part-time waitress at a restaurant, to manage with the mounting medical costs.
"Her monthly expenses exceed RM2,000. Her special milk costs between RM45 and RM89 per tin, and we also need to cover the costs of changing her feeding tube and buying diapers."
Noor Suraya's husband, Mohd Idzwan Jamari, 42, works as a delivery driver for a private company, but the family still struggles to make ends meet.
They receive a RM300 financial aid from Baitulmal and RM500 from the Social Welfare Department, but it barely scratches the surface of their needs.
The couple's third child, Mohamad Daiyen Danie, 15, also requires medical attention.
He underwent heart surgery at the National Heart Institute in 2018 to repair a leaking heart valve and still requires regular check-ups every five months.
"We've had to make sacrifices, sometimes even skipping meals to afford Noor Qaira's care.
"The doctors have told us that her chances of recovery are slim, but as her mother, I still hold on to hope," she said.