“This could be my one chance to save the life of my daughter.”
When Mohamed Faiz received a letter offering his eight year old thalassaemic daughter a life-saving bone marrow transplant in Italy, departing on October 25, he was ecstatic.
“It was amazing, I was surprised and thought we would never get such an opportunity,” he tells Minivan News.
But their dream was shattered when he learned that while the Italian regional government of Abruzzo would bear the cost of the operations, and the Associazione Genitori Bambini Emopatici (AGBE) would arrange accommodation, the offer was conditional on his paying food and all other living expenses for five months – a cost they estimated at US$4500 (Rf57,375).
The 46 year-old father of four has spent most his life trying to extend the life of the two of his children who suffer from thalassaemia, a crippling genetic disorder that affects the body’s ability to produce red blood cells.
The Maldives has the highest incidence of the disease in the world, and for those like eight year old Fathimath Shama with Beta Thalassaemia Major, the disease causes severe anemia and requires lifelong treatment.
According to the National Thalassaemia Centre of Maldives, Abdul Gafoor, there were more than 690 thalassaemia patients registered in the Maldives last year. Since then, 30 have fully recovered while 150 have passed away.
Separated for his wife and working as a dhoni captain, Faiz spends most of his monthly salary of Rf6500 (US$505) on his two children.
“I wasn’t able to save anything,” he says. “I spent Rf4000-5000 a month on the kids’ blood transfusions, Desferal (a drug used to moderate iron in the blood of transfused patients) and other kid’s stuff, mostly medical treatments essential for their wellbeing.”
The relentless financial pressure of caring for children with thalassaemia makes for “a hard life” he says.
“You have to struggle, and most of your time is spent thinking about the future of the poor kids,’’ Faiz explains. “It’s hard to handle the situation when you have to afford the same treatments every month, without any idea of when you might find a better way.’’
Faiz received word through the government one and a half months ago that Fathimath had been selected for a bone marrow transplant in Italy, a risky procedure with many possible complications and reserved for patients with life-threatening disease, but nonetheless offering a chance of recovery.
His other daughter, aged 18, needs to travel to Italy as well to serve as the bone marrow donor; according to the National Thalassaemia Centre of Maldives, only 10 patients in the Maldives have a donor sibling who matches closely enough to attempt a bone marrow transplant.
But despite beating those odds, and so close to a cure, Faiz has despaired of being able to afford the high cost of living in Italy for five months.
“The organisation will bear the cost of the operation, accommodation and tickets, but we were asked to cover all the other expenses,’’ Faiz says, awkwardly. “We have to stay there five months at least.”
He now believes the offer is the only hope his daughter may fully recover, and increasingly desperate, has resigned from his job to focus full-time on raising money for the trip.
“For an ordinary person like me, this is a once-in-a-lifetime opportunity,” Faiz says. “I would despair with the world if missed this only chance, the only hope to save my daughter. I would have to live knowing I missed a miraculous opportunity to make my daughter normal, and give her a real chance at life.”
Mohamed Faiz can be contacted on (+960) 773 4042, or (+960) 762 7899. Faiz’s Bank of Maldives account number is 7701-153358-101.