“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.
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Thalaseamic kids got more medical benefits during Maumoon era.
Thanx Minivan news for posting something like this. Guess more people will become aware and lend a helping hand.
is there anyway we can somehow donate directly or set up a fund to help?
Please contact Faiz directly on any of the numbers listed below the story. -Minivan News team
You can criticize the former president but during that time was open first Thalassaemic center in Male .so what you can see at present days?What is new medical services for peoples with terrible disease was open during last 2 years?
can take the required amount from the fund we raised for pakistan relief fund...when our nown people are stuggling for life its our duty to help them first...
ablo: Did those benefits lead to an end to suffering, or did they just prolong suffering?.
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Now here's a worthy cause to donate to.
@ablo & The Mist
for crying out loud, do u HAVE TO drag politics into everything. Please dont try to branch out n start a blame war. Getting sick and tired of hooligans like you.
Yea...I just messaged Mohamed Faiz on (+960) 773 4042, or (+960) 762 7899 to donate some money.
Why dont you all stop talking absolute non-sense and do the same.
Ablo, forget the politics and just donate! It's people like you who politicize everything! Bastards! You ruin this country!
"Charity begins and at home", If we cant help our own people, we should be ashamed of oursleves. Can someone start a telethon to help such people here in our country. Atleast we can have a fund.
@ablo and The Mist
Nobody denies the good things that happened in the government of Maumoon Abdul Gayoom. To refresh your memory,
we voted for change because we were sick of the kleptocratic government of Maumoon Abdul Gayoom which created the mafia that now controls our lives every way you look. We were sick of the leaders of the former government using our money and our resources to their benefit. We were sick of begging for everything. So like Tired and Crazy of Politics above said, why don't we leave politics out of this and look at how we can help these families?
Why Minivan news is not respecting intellectual property rights. This blood picture is not a property of Minivan news, I don't think there are facilities in Maldives you can take scan electron microscopic picture like this. Even if its done abroad its fine, but this picture is from website of famous biomedical company I know well.
I think it would help Faiz if Minivan had given an account (both Dollar and Rufiyya) so those who wish to donate can easily do so. I reckon many would contribute and hopefully he will be able to collect the required funds. Online banking is now available in the Maldives and this would make it easier for the person donating too.
I understand Minivan has done this when Maryam was in charge and I believe it turned out to be success and the child was able to get the treatment abroad.
I hope Nazeer will follow up on this and report in the success of this case.
@ekola lets sue minivan for that n donate tht to the needy..
Is sad that this guy got his second id pretty well about his chances of having a normal child.
Its a known fact that everyone knows about the condition in Maldives but even still they choose to have kids regardless of the suffering they would go through.
Italian govvernment might be thinking that our government could have afforded all the cost to save the life of this child with all the money they get from the Italian tourists visiting Maldives everyday. Its a good thing the Italians are helping and Im happy for the family who has got this chance. But its a day of shame for our governemnt as they have proved to be failures to our own people. I hope for a day when we will stop begging from others and use our own resources and wealth to our own people.
can some idiots not talk about former govt, present govt and bring policts to thiss!!!! FOOOLS..this a lil girl in need of help and u dont need to bring in politics for this.!!
Is there any way we can send money online to this dhoni captain. I think this is do able thing to raise this small amount of money for a good cause, $4500 is not a big money in these days in Maldivian standard, where everyone carries iphone4 in Maldives.
Insha Allah I will donate at least something to the Account Number tomorrow. Hope the child would recover fully after the operation.
I was always of the thinking that our Marriage Act should be more strict to avoid new thalassaemic kids being conceived.
I hated 'blind' couples who united to produce SUFFERING!
I have seen in my life 'pathetic' couples who were so stubborn even after learning about their medical condition they went ahead with their marriage and brought out willfull SUFFERING, giving the excuse 'love conquers all'
Why not all just donate anything they could instead of politicizing this or making a controversy out of this?
AND I quote from the article:
"Mohamed Faiz can be contacted on (+960) 773 4042, or (+960) 762 7899. Faiz’s Bank of Maldives account number is 7701-153358-101."
There are still more people in our community who are in desperate need for medical and all sorts of other social and moral support. Do what you can to help even one single person, and it matters a lot for that person. That how we can change the world. (On personal level if we do all that is right and good)
Learn "The Golden Rule": [http://en.wikipedia.org/wiki/The_Golden_Rule]
May Allah bless Faiz,his 8 year old kid, his family and all of us.May Allah give us wisdom to act in support of our fellow humans in anyway we could.
Come on guys we are talking about 4500$, a huge sum for an individual but 10$ apiece for 450 persons, less that what you spend to bring you spouse/girlfriend/companion out for tea. Just put your hands in the pocket....
get madhana five star..the thing will be solved then..