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28 March 2024

Little Shahira needs Dh750,000 to treat thalassemia

Published
By Sneha May Francis

A father, struggling to collect funds for the treatment of his only three-year-old daughter for genetic blood disorder, thalassemia, has sent out an appeal for help.

After a failed bone marrow transplant in Pakistan in 2013, he is now planning to take her to Italy for a second transplant by a specialist doctor, for which he requires nearly €150,000 (Dh750,000).

The doctor who is treating his daughter in the UAE confirmed that the transplant, if successful, will help cure her completely.

Talking to Emirates24|7, Dr Essam F Dohair at the Dubai Thalassemia Centre of Dubai Health Authority (DHA), said the success rate for bone marrow transplant, which is the only cure, is higher for younger patients.

“There have been many cases where the second bone marrow transplant has been successful. And, I know of many cases where people have gone on to lead normal lives after the transplant,” he adds.

Pakistani-born Faheem Sultan’s little girl Shahira was diagnosed with the dreaded genetic disorder, caused by the weakening and destruction of red blood cells, when she was only five months old.

Since 2011, she has been given regular blood transfusions to control her condition. “Every month we take her to the Latifa Hospital for the blood transfusions. She’s a brave girl. She doesn’t know a life other than this, and probably thinks this is normal.”

The little one, who can barely string sentences together, cries every time a needle is injected for the transfusion. “As part of the treatment, she also has to undergo the Calais therapy, where a butterfly needle is injected into her belly for an entire night. That’s when she’s most uncomfortable,” the father says.

The Latifa Hospital staff, he adds, have been of great assistance and the blood transfusions are free of cost.

It’s, however, the second bone marrow transplantation that is proving costly.

Faheem had in 2013 used up his entire savings for the child’s bone marrow transplant in his home country, but that’s a decision he regrets today.

“I had saved up $30,000 (Dh110,000) and found hospitals in Pakistan that fit the budget. So, after my wife matched as her donor, we decided to take her to our country.”

However, it’s after the transplant and subsequent checks that Faheem realised that the facility was not up to standard. “I felt helpless and was stuck.”

He adds that the test, which was conducted after 3 months of the transplant showed that 70% in the body’s acceptance with the donor, when it should’ve been 100%. “That raised an alarm, but it was too late.” From then on, the number gradually went down and has led to a relapse of her condition.

The family returned to the UAE, and is now planning on attempting a second transplant. “I decided to go to the best in the field, because I don’t want to take any more chances with my daughter’s life,” he admits.

“I’ve done my research and zeroed in on Italian doctor Pietro Sodami, who is well-known for the treatment of thalassemia. During our interactions he told me that the second bone marrow transplant will incur a 20 per cent risk, but he is confident of doing it.”

The hospital in Italy says the bill will be around €150,000 (Dh750,000) and for the salaried worker who earns Dh10,000 a month, this is tough to cough up.

“Also, depending on her recovery we will have to stay with her in Italy.”

“The facility in Italy is the most famous and they have the best facilities. And, since it’s the second transplant it’s advisable to go to the best in the field,” adds Dr Essam. “In the UAE, we don’t have this facility, but we refer our patients to well-known centres around the world for it, and Italy is one of them.”

Frequent blood transfusions have taken a toll on Faheem’s daughter, as it leads to iron overload. “Unfortunately, this is the outcome of frequent blood transfusions, and an iron overload can damage the heart, liver, and endocrine system.”

Her immune system has also been impacted, and Faheem has had to rush her to the hospital numerous times as she falls sick often.

Faheem, who has been working as collection officer at Lootah BCGas, said his company “has been extremely supportive, and has allowed me flexibility in my work. Or else, I wouldn’t be able to manage it all.” Being the only earning member of the family, he admits it’s a struggle to make ends meet. “I’ve also incurred a lot of debts during the last few years. But, I would do anything to give my daughter a normal life.”

Dr Essam adds that if the transplant is successful, then Faheem’s daughter can go on to lead a normal life and wouldn’t require any more blood transfusions or medications.