8-year-old girl with chronic neurological disease passes away

Eight-year-old Aliya Darwisyah, whose battle with a chronic neurological brain disease MalaysiaNow first reported last year, passed away at Hospital Kuala Lumpur (HKL) at about noon today.

Nur Haslinda Eunos, an activist who had been helping Aliya and her mother Zaitul Akma Muhd Zin with their transportation fees to hospital, among other things, said the girl was admitted to hospital on Wednesday with a high fever and cough.

“Zaitul and the family are still at HKL,” she told MalaysiaNow.

She said Aliya’s remains would be brought to Masjid Damansara Damai in Petaling Jaya before the burial ceremony.

MalaysiaNow first reported the story of Aliya and her brother last year. Both she and Adib Aisy Rizqi struggled with neuronal ceroid lipofuscinosis. Aliya however deteriorated in health over the past few months.

Neuronal ceroid lipofuscinosis is a neurodegenerative disorder that affects the nervous system. Symptoms include a combination of dementia, epilepsy and loss of vision.

The disease normally begins in children between the age of five and 10.

In April, Zaitul had voiced concern about her children’s sponsorship for medication which was due to end in July.

This would have left her with medical bills of about RM2.7 million for two years.

MalaysiaNow’s last visit to Zaitul’s home in Damansara then found Aliya bedbound on a matteress in the living room beside her medication and an oxygen machine.

She could no longer hear or speak, and had lost her sense of taste.