Ameera's hero

Four-year-old Ameera likes music. Mehrnaz knows this; when someone sings to her daughter or plays a musical toy, she can tell Ameera is enjoying it.

“Any song at all,” Mehrnaz says, “She listens intently. She listens like she can understand everything.”

When her son plays in the garden, Ameera sits in her wheelchair and watches. She cannot actively participate in anything that requires moving on her own.

“I feel she is imprisoned all day,” Mehrnaz says. When she takes her daughter outside, people look at her like she is a prisoner.

But Mehrnaz doesn’t feel that Ameera’s disability is something to be ashamed of or embarrassed about.

“We shouldn’t hide our children; it’s not their fault. God made them this way and hiding doesn’t help,” she says firmly.

In 2012, when Mehrnaz rushed to the hospital with Ameera— a year and a half old at the time— she was worried, yes, but she didn't think it was anything huge. Ameera had contracted fever and was unwell, but things had just started going wrong. She had a seizure and grew worse; one thing was lead to another.

A week after she fell sick, doctors realised that their initial diagnosis was incorrect. Ameera was rushed to a different hospital, where the root of her illness was instantly detected: her brain was completely damaged.

Mehrnaz remembers being in a state of shock. “I started banging my head against the wall,” she says. “Imagine just sitting there, and suddenly your child gets fever, then she has a seizure… I lost my wits.”

What hit her most was how her normal, functioning daughter had suddenly lost everything. Only a few days before, Ameera had been walking and crawling like any other healthy child. Now, she could no longer move her foot. Mehrnaz could remember her daughter's words and laughters from the previous year, but in its place now were only sounds.

“The shock remains, of course, and it did for months,” Mehrnaz continues her story. “But slowly, as humans, we can adjust to anything.” She realised she would have to keep fighting, and she did. “I had to do whatever I could for her.”

Moving continents

While her husband stayed behind in Karachi, Mehrnaz moved to London the same month with Ameera and her son, who was four years old at the time. Life in London was by no means easy, but it was easier. Mehrnaz had sidewalks, wheelchair ramps on public vehicles, and wide open spaces where she could take her daughter openly and comfortably. At the very least, she could now take her daughter outside.

“I was content that whatever was happening was happening for a reason… for my children," she recalls. For the next year and a half, her days were dedicated only to Ameera’s well-being. She put off her career in medicine to take care of her; nothing else mattered.

Ameera, meanwhile, was getting the best treatment possible: she started intense physiotherapy and speech therapy under the care of doctors Mehrnaz trusted.

Everything was planned for them under England's free healthcare system: the hospital sent reminders for upcoming appointments and medicine replacements, doctors and nurses were accessible, unlike in Karachi, and Mehrnaz had constant access to resources advising her on Ameera's upbringing; what therapist to go to, what school to enroll her into.

Thrice a week, a nurse visited their home to check up on Ameera and her equipment, and to give Mehrnaz a break for five hours. For those five hours, Mehrnaz was free to do her own things, to pause for a while.

Everyday fears

Mehrnaz moved back to Karachi in January last year. Unlike in London, here, there is no moment she can rest. Ameera has improved with time, but she is still completely disabled. She needs assistance to eat, to walk and to move around. Merhnaz has hired a full-time nurse to help out; Ameera has to be fed through a tube, and has medications specified for different times of the day.

Everyday tasks are challenges. There are only a few doctors in the city, and it is a nightmare to coordinate with their packed schedules. In addition to her feeding tube, Ameera needs a special wheelchair, a special bathtub and a standing board.

Mehrnaz brought all her equipment from London, but when something breaks down or needs a new part, she does not know what to do.

The one time Ameera’s feeder tube broke down, Mehrnaz panicked because no doctors or medics knew how to fixed it. She rushed Ameera from one hospital to another; she called up doctors ten times, even twenty times. She even tried to change the tube herself. Finally, she finally found one doctor who agreed to help her figure it out; the rest told her they had never handled such equipment before.

Mehrnaz keeps telling her husband they should move back to London, even if for a little while. It isn’t that Ameera has regressed in Karachi, but the amount of attention and precision required in taking care of her is not made easier by the lack of professionals and resources. “My heart fears for her,” Mehrnaz says.

Learning through love

The difficulty of raising a “normal” child is a task on its own, Mehrnaz feels. Any-four-year-old’s energy is enough to tire a parent out, but here is a special child who is dependent upon her parent for everything. Mehrnaz knows her son can take care of himself, but Ameera's case is entirely different.

“That kind of love can’t be described,” Mehrnaz reflects. “It cannot be experienced with normal children.”

That doesn’t mean she loves her son any less—but the love she feels for Ameera is layered with more. For one, she has realised over the years that she will do anything for her daughter. “I have also realised I am much stronger than I was,” Mehrnaz says. “I have learnt about my own strengths. I have learnt how deep love can be.”

She draws her strength from her commitment to her child. “Yes, I have support from my family, from my husband, from the nurse… but at the end of the day I have to do everything alone.” Even then, Mehrnaz realises she is one of the lucky ones. “Think about all those people who don’t have money and facilities,” she says. “Think about all the other mothers going through these challenges every day.”