Fatima has a spirit that is as cheerful and effervescent as other children of her age. Though she has multiple problems, it is apparent that she makes a conscious effort to come across as a normal person.
The little girl has deformed palms, stiff fingers, oblique feet, abnormally big knees and joints. Born with multiple deformities due to a condition called Arthrogryposis, her condition worsens with age and requires immediate attention.
“When she was born, she was like a frozen chicken. At that time I could never think that she would walk so soon. A lot of hard work and treatment has meant she stands on her feet now,” said Fatima’s mother Fatima Ruzeena, who is from Sri Lanka.
The treatment for the rare disease is complex and expensive.
Though, Fatima’s health has shown great improvement since her birth, time is running out for her to undergo surgeries that could permanently cure her.
Sadly, she hasn’t been receiving any treatment for the last one year as her parents say they can’t afford it due to an unfortunate turn of events.
“She needs multiple surgeries and that requires a lot of money. We have been consulting doctors in Sri Lanka as well as here but health care here is very expensive. We have been giving her physiotherapy treatments but it is very expensive, as each session costs around Dh1,000. My husband had taken a huge loan to pay for her treatment but now he has lost his job,” says the mother pensively.
Fatima’s father Mohammad Rizwan, who is also a Sri Lankan, had been working with Emirates airlines for 16 years as a cabin mechanic. However, he lost his job after he was “falsely implicated” in a theft case. Though, he wasn’t found guilty and was released after a couple of months without deportation, his time away from work fighting his case meant his position was filled by somebody else.
“I’m jobless now and I have a travel ban because I have defaulted on my loan payment. Though Emirates airlines were kind enough to give my wife a job, half her salary goes in repaying loan instalments,” said Rizwan, who is hoping for Emirates to take him back.
Rizwan says that though his visa has been cancelled, he cannot exit the country because of a travel ban and he is worried the immigration authorities might penalise him for overstaying.
“I don’t know what is going to happen. I m more worried about my daughter because now is the right time for her to do her surgeries; with every passing day it will be more difficult. Even if I want to go back home with her and try to get some help, I can’t because of this travel ban,” added the 35-year-old, who until a year ago was dreaming of writing his engineering exams.
Though Fatima can walk wearing orthopaedic shoes, walking even a small distance is very painful and makes her hunch. She also has difficulty hold things in her hand and as she grows up her body will get stiffer.
The six-year-old will have to undergo multiple surgeries to correct problems with her nerves, bones as well as skin, which is estimated to cost above Dh100,000.
The amount is too huge for a debt-stricken family relying on a single income of Dh4,000, a good portio nof which goes in repaying the loan.
“We were leading a happy life and until last year I was preparing for my daughter’s surgeries and suddenly a deluge of problems fell on me. Time was so bad that we spent three months without electricity because I couldn’t pay Dewa [Dubai Electricity and Water Authority] bills. I was given an eviction notice but thanks to Emirates and some friends we are just surviving,” said Rizwan, who also has two sons.
The boys, Mohammad Akeel, 5, and Abur Rahman, 3, are normal but don’t go to school because of the family’s financial situation.
“My dream is to send my children to school and lead a normal life. I’m really frustrated as I’m suffering for a crime that I have not committed,” Rizwan said.