The lack of support she experienced during and after her heart transplant motivated Reena to set up her own foundation – The Light A Life Reena Raju Foundation. In an interview with ParentCircle, Reena sheds light on how she has taken up this cause and is actively involved in supporting organ recipients by not only providing them with monetary support, but also encouraging them to lead normal lives. Hers is truly an inspiring story.
PC: What inspired you to set up a foundation for organ recipients?
Reena: I had lived with a failing heart for three years. My family’s accounts were dry when we needed Rs 5 lakhs for a heart transplant. Friends and well-wishers donated, and I had the transplant. But, after the surgery, it cost almost Rs 50,000 a month for the first 4–6 months, then Rs 30,000 and Rs 15,000 for another few months. And, we didn’t have money. We started asking people and clubs (for money) and they said, “But, why do you need money? You are already fine; you have had a transplant.” Post-transplant care is important, as without medicines patients can die. So, I thought if this is my situation, what would happen to other patients who are looking forward to transplant as an option. I approached NGOs; but, nobody was interested in post-transplant care. That forced me to start my own foundation called, ‘Light A Life - Reena Raju Foundation’.
PC: Tell us something about your foundation.
Reena: Our vision is to make organ transplant a viable option for patients in India. We create awareness mostly through the media, events and campaigns. We do pre- and post-transplant counselling, and family counselling, which is very important. The whole goal is to get patients to live a normal life and motivate them to move on. Most important of all, my experience has taught me that patients need medicines. So, we raise funds for almost a year or more for patients who fit our eligibility criteria for immunosuppression and antirejection drugs, which are most important. We purchase them at subsidised cost and gift them to patients on a quarterly basis for a year or so. We also try to find recipients a job to help them get back to their feet.
PC: How is your foundation changing people’s perceptions about heart donation and transplantation?
Reena: In the past 8 years, I have done a lot of TV interviews, which I feel is the best way to reach out to people. So, when people see me, they understand that this is possible. Coming to heart transplant, people now understand what it is, and they know that tomorrow someone in their family or they themselves may need it. So, they are very supportive, and I think heart transplants are picking up pace.
PC: You also interact with children. How do they perceive organ transplantation?
Reena: They are fascinated. College and school students ask a lot of questions. However, instead of me or NOGs giving talks, which children forget after some time, if a chapter on organ donation and transplantation is added to the curriculum, it would be very interesting. Children want to know more. I really hope that our education system adds a chapter on this.
PC:You have participated in World Transplant Games (WTG). Among other things, was it also to prove that organ recipients can lead a normal life?
Reena: I have been a sportsperson ever since I was a child. I have played hockey at the national level, high jump, long jump, hurdles and 100 metres. After my transplant, I got to know about the games and was desperate to participate. So, when WTG happened, I decided to take part in it.
PC: Which events did you participate in?
Reena: I took part in the badminton mixed doubles and we won against Great Britain in the first match but lost the second one. I also participated in the 100 metres race. But, I was not well that day, so I just ran at my pace as I didn’t want to push myself. Also, I attended a lot of meetings, as there was nobody representing India there. I became the flag bearer, which was a very proud moment. I feel now that it was the last honour to my donor and my country.
PC: How has participating in WTG changed your views about life?
Reena: The games gave me a very different perspective towards transplants. I met a triple kidney recipient, double lung recipients, liver recipients. There was a girl who fractured her toe playing basketball. Yet, she kept playing. They were all very passionate about their game. They didn’t care about what would happen because they had seen and endured so much pain. After my second transplant, a lot of patients in India panicked. But I told them that because I was fit, I could make it through a second transplant. Even now, after the surgery, I cycle in my room, I exercise and walk. So, it doesn’t mean that if you are a patient, you should stop doing activities. I would like to bring in the sports culture in patients because it will help them rather than harm them. It will make them fit and sustain the organ they have.
PC: What is your message to those in need of transplant and organ recipients?
Reena: Anybody walking on a road can die, you don’t know. So, do not fear. You have had this problem, that is okay, you can make it. If I can do it, you can do it.
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