For three years, Aliya Darwisyah was like any other little girl who loved running around and playing.
One day, though, everything changed.
She was sitting in the car with her mother, Zaitul Akma Muhd Zin, when it happened.
“She choked on something in her mouth and her face grew pale. We rushed her to hospital where the doctor said she had suffered a seizure.”
The problem was they did not know what had caused it.
“It broke my heart when the doctor told me.”
Aliya was referred back and forth between Hospital Kajang and Hospital Kuala Lumpur until a blood sample was eventually taken and sent to Germany for screening.
The results came back: Aliya was suffering from neuronal ceroid lipofuscinosis, a neurodegenerative disorder that affects the nervous system. Symptoms include a combination of dementia, epilepsy and loss of vision.
“It broke my heart when the doctor told me,” Zaitul said. “She had never shown any symptoms of the illness before.”
From that day onwards, though, the signs were clear. When she was four, Aliya began to fall down while walking. Her speech gradually declined, along with her ability to chew and eat her food.
By the time she was five, she was completely bedridden.
She now drinks milk through a tube that connects to her nose. Her medication is administered the same way. Her doctor had suggested that a tube be implanted in her stomach, but Zaitul was reluctant to do this.