"A Family’s Energy and Strength"

February, 2012 – Rahul Kapoor is the sole member of his immediate family with thalassemia – but his entire family shoulders the struggle. They’ve rallied around him and supported one another since he was diagnosed with the blood disorder when he was four years old.

Now nineteen, Rahul is a sophomore at the University of Georgia, where he’s studying microbiology. That course of study, he says, was inspired by his older brother Rohan, who’s a senior at the university.

“He guided me on that path, toward medical studies, when I told him I wanted to help people,” Rahul says. “Blood doesn’t scare me at all.”

That’s a good thing, not just for his chosen career, but also for his daily life. After all, he has to undergo a blood transfusion every two weeks – and the transfusion process takes up to seven or eight hours each time.

Rahul’s family has rallied around him and supported one another since he was diagnosed.

“Sometimes the nurses have to stick me multiple times to find a good vein. I can often feel the blood going in and coursing through. Sometimes it hurts,” Rahul explains, adding that he feels “more energized and alert” the day after a transfusion.

Rahul’s family has rallied around him and supported one another since he was diagnosed.

Rahul admits that it was all a lot harder when he was younger. He wanted to stay strong for his parents as he had transfusions and other treatments. He didn’t want them to see him cry.
But it’s easy to see that Rahul’s parents – Pawan and Nandini – are extremely proud of their son, especially considering everything he’s been through.

“When he had to take treatments at school, it was embarrassing for him, but he stayed strong and did what he needed,” Pawan says. “Compliance with medication is one of the biggest issues for those living with thalassemia, but that’s something we don’t have to worry about with Rahul. He’s strong and committed.”

Proper care for children with thalassemia is a major commitment for parents as well.

Proper care for children with thalassemia is a major commitment for parents as well.

Pawan has been there to help his son along what has often been a difficult road. When Rahul was about 15, Pawan learned about the Cooley’s Anemia Foundation (CAF). He started reading more about the disorder, and about treatments and ways to help keep his family strong. Pawan has reached out to other families in the Atlanta area, trying – with help from CAF – to organize gatherings where people could get to know each other, share helpful advice and form a community of support and care.

Proper care for children with thalassemia is a major commitment for parents as well: between medication, transfusions and other treatments, the Kapoor family’s costs come to roughly $9,000 per month. Most of that is covered by insurance, but it’s still a considerable investment of resources and time.

Despite his hectic college schedule, Rahul always makes time to do what’s best for his health, as well as returning home from college to visit with his family and friends. And, when I ask him what classes he’s taking this semester, there’s a surprise that gets everybody talking.

“I’m taking biology, horticulture, physics and dance appreciation,” Rahul notes. Dance appreciation?

“I’ve been part of dance teams since I was seven or eight years old,” Rahul says.

“And when we had family parties, there were always a couple of performances by the children,” Pawan adds. “Rahul has used dance to help others, too; he was part of a charity event that raised money to help blind children.”

When Rahul completes his college education, he wants to continue helping others. He’s planning to attend medical school to study hematology, particularly concentrating on blood diseases. From there, he wants to travel the world and treat patients in places where blood disorders like thalassemia are especially prevalent.

Maintaining energy is one of the biggest obstacles for thalassemia patients – but Rahul Kapoor and his family seem to have boundless energy to not only meet their challenges, but help others meet theirs.

Help CAF Keep Helping Patients Like Rahul. Click Here to Make an Online Donation.
Story:
Roger Burks
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Photos:
Thatcher Hullerman Cook


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