Five-year-old fighting rare disease: Ashulia Women and Children Hospital to fully fund treatment following TBS report

The Ashulia Women and Children Hospital (AWCH) hospital authorities have taken full financial responsibility for treating five-year-old Arisha who has been suffering from a Gaucher disease, resulting in frequent seizures among other severe complications.

Earlier on Sunday (13 August), a report documenting the girl's illness and the financial toll it had taken on her family was published on The Business Standard's online version (both English and Bangla) titled "Five-year-old fights for her life against rare disease. But her parents are fast running out of money". 

The report was met with an outpouring of support, with many wishing to contribute to funding her treatment.

After coming across the report on social media, the Ashulia hospital authorities contacted Arisha's father, Md Ahraf, and offered an all-expenses paid treatment for the child. 

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

Arisha is currently undergoing treatment at the hospital for pneumonia, after she was shifted there from the Dhaka Shishu Hospital.

"She will be sent to the capital's Evercare Hospital on Saturday for better treatment," Md Ashraf today told TBS. 

If Evercare sees that a NICU [neonatal intensive care unit] is required then the hospital will keep her, and if not, treatment will continue as per their advice at Ashulia, he added. 

He also said the free service for Arisha will continue in this hospital for life, according to the authorities.

Expressing gratitude to The Business Standard, he said, "Due to your efforts, my daughter has been treated in such a beautiful environment. I am eternally grateful to everyone who stepped up to help out with her treatment. Their generosity was beyond my expectation." 

Dr Dabir Uddin Ahmed, chief executive officer of the AWCH, told TBS, "We try to help those who are underprivileged. We have arranged for Arisha's treatment on humanitarian grounds. One of us has been assigned to arrange whatever help we can for the child.

"Since she suffers from a rare and complex disease, in case we cannot manage it, we will arrange for it to be taken care of at an advanced facility. Arisha is scheduled to be examined at the Evercare Hospital on Saturday. Evercare offers plenty of facilities. After visiting there, further action will be taken as per their suggestion," he added.

The rare health condition

Arisha Ashrafi Khadija was a child that illuminated the world. As a child, Arisha used to fall down while playing around the house. When her dad consulted a doctor, he was told she suffered from a lack of nutrition and was 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.

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.

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

Around midnight on 23 July, Arisha had another seizure.

When a doctor at Shariatpur Sadar Hospital 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.

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.

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 fee per day.

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