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.
“I am just too scared for her.”
But more grief was yet to come for the 36-year-old mother. Aliya’s blood sample had been sent to Germany together with one from her baby brother, Adib Aisy Rizqi.
He, too, was diagnosed with neuronal ceroid lipofuscinosis.
He developed normally until he was three. At that point, like his sister, he began suffering seizures, sometimes up to five times a month.
However, Adib was more fortunate than his sister as he had been diagnosed with the disorder as an infant and was given treatment earlier.
Now five, he can still move about and play like other children, but he cannot speak.
In a bid to prevent his condition from deteriorating, he went for enzyme replacement therapy in 2019 through intrathecal administration in his head, becoming the first person in Asia to receive such treatment.
The medication must be administered once a week and sessions usually sees them stuck at the hospital all day.
It is also imported from Germany, and supply is not always certain.
“He has not received his medication for two months now,” Zaitul said.
Her stress is compounded by an ongoing divorce which has left her single-handedly caring for Aliya and Adib as well as their older sister who is 12. Another daughter, her eldest, is staying with her husband.
For now, Zaitul and the three children are staying in the living room of a terrace house in Damansara Damai, rented by her eldest sister. Her mother is also there as she was unable to return to her home town due to the travel restrictions imposed under the movement control order (MCO).
“He has not received his medication for two months now.”
She wants to find a proper job but taking care of Aliya and Adib is a full-time job on its own. The best she can do at the moment is to help her sister sell tapai and pulut panggang at a roadside stall in the area.
But this, too, is far from a sure thing. Sales were good during the first MCO as many had spent the Raya period in the city, which meant a lot of orders.
“However, sales have been on the decline,” she said.
Of late, things have been so bad that her sister has been forced to give up the house. This will be the last month that they stay there as they can no longer afford the rent.
“We are moving to a nearby apartment with a cheaper monthly rent,” Zaitul said.
Fitting the entire family there will be a challenge but they have no choice.
They receive some aid from a charity organisation, MyHeart Association, which has given them items such as diapers amd milk and helped covered some of the cost of hospital transportation and treatment.
Such assistance helps Zaitul soldier on, but even so, she knows that the road ahead will be long and winding.