Expressnews
Chennai, Tamil Nadu, May 2023: Milaap.org, India’s largest crowdfunding platform and Kanchi Kamakoti CHILDS trust Hospital, a reputed paediatric hospital in Tamil Nadu organised an event together to create awareness on Thalassemia in children. To commemorate World Thalassemia Day, which is celebrated on May 8th every year, the event honoured the struggle of patients suffering from the disease. It brought together affected children and their families and well-known haematologists to speak about the condition, its traits, things to be mindful of, the journey to recovery and medical crowdfunding. It concluded with a delightful and engaging session of clowning and puppetry and magic show to help the children and their families heal through laughter.
Thalassemia is a genetic blood disorder in which a person’s body cannot make enough red blood cells and requires blood transfusions every 3-4 weeks. Regular blood transfusions lead to iron overload that causes morbidity in the form of growth retardation, endocrine problems, cardiomyopathy, transfusion transmitted infections and osteoporosis. These complications reduce their overall quality of life. Provision of safe lifelong monthly transfusions and optimal chelation therapy is a challenging task and they require comprehensive multidisciplinary care, including haematologists, endocrinologists, gastroenterologists and cardiologists.
The speakers at the event also explained crowdfunding as a viable financial option for those undergoing medical emergencies (such as thalassemia). Many times, the beneficiaries and their families exhaust their personal savings, medical schemes, insurance cover and run into high financial debts to continue the treatment. Especially for conditions like Thalassemia, where prolonged treatment is required, hospital and associated medical costs turn out to be very expensive thus adding further distress to the patients. To overcome such scenarios, crowdfunding has emerged as a trusted and safe way for people to raise funds online, in their own network of friends, family and other generous donors on the internet to support them in their battle through such emergencies.
According to Dr. Meena Sivasankaran, Consultant, Department of Hematology, ”Approximately 10,000 children are born with this problem in India every year. Even with the optimal blood transfusion and iron chelation therapy, quality of life may worsen due to complications related to transfusions and excess iron with life expectancy being around 25-30 years only. With bone marrow transplantation they could lead a normal life like any other child, without the need for blood transfusion”.
Anoj Viswanathan, Co-Founder and President, Milaap said, “Today’s event is to acknowledge the brave hearts who are affected by the condition and stand by them in their hour of need. We would also like to salute the community of doctors and caregivers for their endless hard work and dedication to help the children in their journey to recovery. As a crowdfunding platform, we ensure that the patients and their families have a safe and trusted way of raising funds, with the generosity of donors on the internet.”
A 3 year-old child, Adiya Kumar Konnuru, from Vijayawada was diagnosed with Thalassemia Major. His parents took him to the hospital every month for a transfusion and in the process, he developed anxiety due to repeated hospitalisation and transfusion. Later, the family came to know about the curative option- bone marrow transplantation – and fortunately had a HLA matched sibling. He was hospitalised for the procedure and received 1 week of chemotherapy, followed by the bone marrow transplantation. He stayed in the specialised BMT room till the donor cells started to function (4 weeks of hospitalisation) followed by close monitoring on an outpatient basis for 1 year. Now he is transfusion-free and goes to school like other normal children. The family also managed the treatment expenses by crowdfunding on MIlaap.
Milaap is a trusted name for medical crowdfunding in India and provides for its beneficiaries beyond online fundraising. It directly engages with the patients and their families/caregivers through various initiatives and is building a community to help them through their recovery journey. Medical clowning and puppetry is one such initiative that has been organised by the platform in several hospitals across the country for children battling through chronic treatment. Milaap volunteers use humour to entertain the kids and let them play in their own way. The event concluded with a professional magician pulling some tricks on the audience and leaving them in splits.
