Parents of Thalassemia-affected siblings seek Kochiites assistance – The New Indian Express

By Express News Service

KOCHI:Every parent prays for the well-being of their children. While the prayers of many are answered, there are some who are not so lucky. Yet, they do not lose hope and fight for their childrens lives.Mubarak and Nisha are one such couple which is fighting for the lives of not one but all three of their children.

Faizy, our six-year-old son, was diagnosed with Thalassemia Major, a blood disorder, when he was three-months-old, said Nisha. The couple had been struggling to come to terms with the news when they were dealt another blow.

We neither knew nor expected that Faiha, our five-year-old daughter, would also be diagnosed with the same disorder. She was diagnosed with Thalassemia Major when she was just nine-months-old, she said.For the past six years, the children have been undergoing blood transfusions every 14 days. Our lives revolve around the transfusion dates and the struggle to find the money for the procedures, she said. Her husband, Mubarak, is a driver. He drives a waste collection truck. However, the regular hospital visits mean he has to skip work on many occasions, Nisha said.

Tragedy struck the family again when their third child, a boy, was also diagnosed with the same disorder when he turned one.

The doctors said only a stem cell transplant could save my kids. We got ourselves tested, but I was ruled out and my husbands stem cell was a partial match, she said.She said the doctors have warned against performing surgery with a partially-matched stem cell as it has its dangers. So, we are seeking donors. Everyday is painful for my children. Faizy alone has undergone 100 transfusions till date, she said.

Ramiz Rehman of Smilemakers, Cusat, said time was limited for Faizy. We need a donor as soon as possible. Else, the family will have to use the fathers stem cell. The procedure has to be done in January, said Ramiz.

How to helpTo help the children, Cusats Smilemakers, in association with the Department of Sociology and the NSS unit of St Teresas College as well as Datri (Blood stem cell donors registry), are conducting a blood stem cell donor registration drive on Tuesday at the college.Aby Sam, the state head of Datri, said one registration drive each were held in Changanassery and Mattancherry.

The drive at Mattancherry saw the highest participation with over 3,600 people registering as donors, he said. People believe that blood is checked to identify donors and compatibility. It is not true. A cheek swab is done for the purpose, said Aby.We only examine and register people aged between 18 and 50 years as donors, said Aby, who was the first person in the state to register as a stem cell donor.

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Parents of Thalassemia-affected siblings seek Kochiites assistance - The New Indian Express

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