RM2.7 million medical bill looms for single mother

Whenever she thinks of her children, Zaitul Akma Muhd Zin is overwhelmed with emotion. Unlike most parents, though, pride and joy are not at the top of the list.

Instead, Zaitul finds herself plagued with anxiety and concern.

Her older child, Aliya Darwisyah, is eight. Aliya’s brother, Adib Aisy Rizqi, is six. Both suffer from chronic motor neuron disease, an affliction which causes weakness that only becomes worse with time.

Adib undergoes enzyme replacement therapy by way of intrathecal administration through his head. For the past two years, his medication was sponsored by a US-based pharmaceutical company, BioMarin Pharmaceutical Inc.

Without this sponsorship, Zaitul would have had to pay anywhere between RM2.3 million and RM2.7 million for the two-year supply.

In about three months, though, the sponsorship will end, and Zaitul is at a loss over how she will manage if she cannot find another sponsor.

In order to receive the therapy which he requires once a week, Adib and his mother must spend the whole day in hospital. The medication is imported from Germany, and is not always in stock.

“The doctor said that Adib would be dependent on medication his entire life,” Zaitul said.

“Otherwise, his condition will deteriorate. He will become unable to walk, and eventually he will lose his mobility. This has already happened with his sister.”

Aliya, Zaitul’s daughter, showed no sign of illness until the age of three, when she was diagnosed with neuronal ceroid lipofuscinosis, a neurodegenerative disorder that affects the nervous system. Symptoms include a combination of dementia, epilepsy and loss of vision.

The disease usually manifests between the age of five and 10.

While Aliya was already in poor health last year, her condition took a turn for the worse. Now, she can only lie on the mattress her mother has placed in the living room beside her medication and an oxygen machine.

Speaking to MalaysiaNow at their home in Damansara, Zaitul said her daughter had just been discharged after nearly a month of receiving treatment at Hospital Kuala Lumpur.

She is now fully dependent on the oxygen machine in order to continue breathing.

Following her discharge, she had difficulty sleeping at night and her doctor was forced to prescribe high-dose sleeping medication in order to help her get sufficient rest.

She can no longer see, hear or speak.

Adib, meanwhile, has been responding well to his treatment and is still active although he cannot speak like other children his age.

Zaitul spends her days tending to him and Aliya, in addition to caring for her two other children who are 13 and 15 years old.

She spends the majority of her time at Aliya’s side, only moving away in order to cook and see to the needs of the others.

She talks gently to her daughter, even though Aliya cannot hear her, and massages her arms, hands and body.

She gives Aliya her medication according to a schedule, and feeds her milk through a tube that goes through the child’s nose.

Everything she can

Until about a year ago, Zaitul and her children stayed with her eldest sister who, like her, is a single mother.

With some help from the Selangor zakat board, though, she managed to move out to her own place provided by the agency. She also receives assistance from NGOs which provide basic necessities such as diapers and milk.

Zaitul, who is in the midst of a divorce, has been unable to find a stable job due to a number of reasons.

For one, she cannot leave her children at home alone. She must also go back and forth from the hospital in order to accompany them during their treatment.

For now, she is doing what she can to earn some money through an online business selling headscarves. She has named the project Aliya Hijab, after her daughter.

“I have made the headscarves, it’s just that I haven’t received any orders yet,” she said.

“I hope to start selling them before Hari Raya.”

Zaitul has never done anything like this before, and she is unsure of success – but she is determined to try for the sake of her children.

“I’m very hesitant – will I be able to do this, do I have what it takes to show my face on Facebook to sell my products?

“But it seems that I must,” she said.

No meaning to Aidilfitri

When asked about preparations for Hari Raya Aidilfitri, Zaitul said she had not given the occasion any thought.

While the celebration is normally marked by luxuries such as new clothes, she has told her children to make do with whatever they have this year.

It has been four years since she saw her family in Jerteh, Terengganu, and she longs to bring her children home to visit.

But given Aliya’s poor health and her constant need for the oxygen machine, Zaitul knows that a trip to her home town will be unlikely this year.

Even on short journeys to the hospital, she worries that Aliya will suffocate without the machine.

“It would help if we had a portable machine, just enough to last her the hour or so that it takes to reach the hospital,” she said.

She also fears that Aliya will develop bedsores from lying on the mattress the entire day without proper ventilation.

Aside from a portable oxygen machine, she dreams of getting a hospital bed which would be more comfortable for Aliya and allow her to administer the child’s milk and medication with more ease.

“I grieve, seeing my children,” she said. “Sometimes I wonder, why can’t they be like other people’s children, normal? Able to laugh and to play.”

Nevertheless, she said, these same children are her source of strength.

“When I see them, I cannot lose heart. They are all that I have. They are what has been keeping me going all this time.”