Five-year-old fights for her life against rare disease. But her parents are fast running out of money

For ten whole days, Arisha could not eat anything except survive on medicines. 

Diagnosed with Gaucher disease, the five-year-old girl faces difficulty breathing and often suffers from seizures. 

A few days ago, she broke two teeth due to a severe seizure while in the ICU. 

One afternoon amid plummeting rain, her mother Arifa Akhter Mimi watched helplessly as another bout of seizures gripped her daughter.

Around midnight of 23 July, Arisha had another seizure. 

A medicine that helps her in this state, Sedil (an anticonvulsant drug), which is usually stocked up at home as she might need it anytime, had completely run out. 

So, her father, Ashraf, took to his heels amid knee-deep water flooding the streets, to find a store, any store. A tablet worth Tk3.5 was priced at Tk150. 

The desperate father managed to bring home some relief for his ailing daughter.

Though Arisha's convulsions reduced, it was not fully under control. 

She was rushed to the Shariatpur Sadar Hospital in the early hours of the day. 

There were no doctors, no nurses. 

Ashraf himself went into the emergency room and placed the oxygen mask on his daughter.

For two-and-a-half years, her parents always carried a bag of medicines, including masks and syringes. When the doctor examined Arisha, he said there was no way but to take her to Dhaka. 

Later, Arisha was admitted to the National Institute of Neuro Sciences and Hospital where she was recommended immediate admission to the ICU. But there was no vacant seat. 

Then her father Ashraf was forced to take her to a hospital in Dhanmondi where medical costs amounted to Tk20-22 thousand per day. 

In eight days, the bill was more than Tk1.5 lakh, a princely sum for Ashraf, who works as a lab assistant in a private school. 

His wife is a teacher in a government primary school. Since Arisha's illness was diagnosed 2.5 years ago, they have spent around Tk13 lakh on her treatment so far.

After eight days, when Arisha's condition somewhat improved, the family returned to Shariatpur on 5 August. 

Ashraf and Mimi still have to come to Dhaka with Arisha once or twice a month, paying an ambulance fare worth Tk5,000, at times much higher. 

The last time he brought her to Dhaka was three days ago on a CNG paying Tk6,000.

Returning home, Ashraf tried to feed his daughter through a tube. But Arisha was not able to eat and would only salivate as though there was a lump stuck in her throat while her convulsions grew stronger. 

Attempts to remove the phlegm with a suction machine at home did not help. She was rushed to the Sadar Hospital again late at night. The doctor's words echoed the same as before, taking Arisha to Dhaka. 

Eventually, after racing to find ICUs unavailable, a bed was arranged in the High Dependency Unit (HDU), with a Tk3,500 per day.

Ashraf bought a nebulizer machine, suction machine, and oxymetre at home. He does not buy medicine by leaf but by box. Arisha has to be given 8-9 medicines twice a day. He says their home has become a pharmacy.

Arisha's mother said, "When she was 16-17 months old, Mas Arisha looked like a doll. Her face was magical. Everyone wanted to hold her in her arms. She would run whenever she found an empty space. I thought my daughter would grow up to be brilliant. I never thought that the same girl would not be able to walk, sit, or lose the power to speak."

Arisha Ashrafi Khadija was a child that illuminated the world. As a child, one day while playing around the house, Arisha used to fall down. When her dad consulted a doctor, he was told she suffered from lack of nutrition and advised to feed her nutritious food. But the problem was far from solved.

Day by day, her walking became more and more wobbly. A doctor advised a genetic test, and he said it is more likely to get the correct result if the test is conducted from India. About Tk50,000 was spent on that test. The report was received after three months. By that time, Arisha was 2.5 years old. At this time, her parents gave birth to another daughter Ariba.

The doctor looked very worried after receiving the report. He did not reveal everything at once, he only said Arisha had a rare disease and the cure has not yet been discovered. He also said Arisha's immune system will continue to deteriorate as time goes by. Her heart, liver, and kidney will gradually fail. 

Since Arisha's immune system is low, even a little fever and cold weakens severely. By the time her sister Ariba turned 2, Arisha no longer had the ability to stand. 

Last Thursday when Ashraf was talking to this writer at the Dhaka Children's Hospital, he received a call on his number. A friend of Ashraf called and asked about Arisha's condition. Ashraf said, "I can't bear her suffering, my friend. Some days she has seizures for 3-4 hours. Now, we only pray that God takes away her pain. I can't keep her in the ICU of a private hospital because I can't afford it. The loan we took has also run out. Now, I don't see a way out."

Arisha's father, Ashraf, can be contacted at this number: 01918145816