Indian girl awaits life-changing surgery for rare condition that caused her tummy to bloat abnormally and forced her to quit school
A nine-year-old Indian girl suffering from a rare disease which has caused her tummy to bloat abnormally and forced her to quit school is awaiting life-changing surgery.
Aafiya Kouser, from a rural village in Hyderabad in the southern Indian state of Telangana, suffers from gaucher’s disease – a genetic disorder, which affects one in 40,000 babies.
The condition has caused her tummy to bloat abnormally, forcing the young girl to quit school after being mocked and ridiculed by her classmates.
The only means to save the Aafiya is an expensive bone marrow transplant which will costs her family a whopping £26,500.
Dr Santanu Sen at Mumbai’s Kokilaben Dhirubhai Ambani Hospital and Medical Research Centre said: “Aafiya has been diagnosed with Mucopolysaccharidosis (MPS), suspected gaucher’s disease.
“This is a severe defect in a child’s immune system.
“A bone marrow transplant is an essential and only curative treatment for this disease and needs to be done urgently.”
Aafiya’s father, Mohammad Mohsin, 34, works as a mechanic in a local garage and her mother, Nazia Begum, 32, is deaf and dumb.
Mohsin said: “The condition is threatening to kill her.
“It’s heartbreaking to see how her fragile body is getting weaker every day and we are unable to rescue her from all the pain.”
Aafiya was born as a normal child like his other two siblings but her problems began three-years-ago.
Her grandfather, Mohammad Sidiq, said: “She started getting tired very quickly and didn’t want to go out to the park anymore to play.
“She even started losing weight.
“We became worried so we took her to doctor but the medication he gave didn’t work.
“After a few days we noticed that her whole body was turning pale and weak, her tummy had started to bulge out and was now abnormally large and hard.
“She stopped going to school because of her tummy. Everyone at school was making fun of her.
“She used to come home crying every day asking us to never send her to school again.”
The worried parents took Aafiya to a children’s hospital in Hyderabad for a check-up where, upon seeing her condition, doctors admitted her.
However, her father claimed that even after undergoing multiple tests, the doctors were clueless about her disease and recommended that they take her to Mumbai.
The parents travelled to Mumbai and took Aafiya to Kokilaben Dhirubhai Ambani Hospital and Medical Research Centre, where her condition was finally diagnosed.
However, to their utter shock the parents were told that her bone marrow transplant would cost them £26,500.
Moshin said: “My wife couldn’t grasp what had happened and is constantly petrified that our daughter will be snatched from us.”
“We have already sold off all our valuables to pay the mounting medical bills and have nothing more left.”
However, a fundraising organisation https://www.ketto.org/ has come to the rescue of the poor family and has gathered over £35,000 within days after Aafiya’s parents have appealed for help.
Varun Sheth, CEO of Ketto, said: “We are overwhelmed witnessing all you supporters donate with your hearts on our platform. Thank you for joining our battle to save Aafiya’s life.”
Doctors at the hospital have taken samples for the bone marrow transplant from four of the patient’s relatives and are waiting for the reports, with Aafiya likely to undergo surgery soon.
Moshin added: “We thank all the people who helped us. We are hopeful that our daughter will undergo a surgery very soon and she will play and go to school again like normal children.”