When Thanmaya Bekkalale and Josephine Joseph, co-founders of the Iksha Foundation (http://ikshafoundation.org), first discovered a white fleck in photographs of their then 3-year-old son’s eye they was not particularly concerned. It was actually a cousin who, noticing the white fleck, told them that it could be a sign of Retinoblastoma and that he should immediately take the child to see a doctor. Josephine & Thanmaya had never heard of such a thing so they turned to Thanmaya’s childhood friend, Dr. Ashwin Mallipatna, a pediatric ophthalmologist in Toronto at the Hospital for Sick Kids. Ashwin assured them that he didn’t think it was anything to worry about. Hearing this, most people would give a sigh of relief, be grateful that their child had been spared, and move on with their life – but not Thanmaya and his wife, Josephine. When they learned more about Retinoblastoma and how it impacted so many children in India they knew they could not forget about it. They teamed up with a close friend, Aravind Seshadri and a few others and began to gather funds and decided that even one child saved would be a victory. Over time, it has been individual donations (ranging from $3- $50,000) that have sustained them. Their mission was to start small…a one-to-one connection with each child. They were focused on impacting a small group initially as they feared that if they widened their outreach too much they would spread themselves too thin and not be able to fully assist each child they had committed to helping. Their goal was to ensure that each child would receive end-to-end care with no worry about cost.
Thanmaya explained to Megan Webber, Co-Founder of KnowTheGlow, that it was not as simple as just paying the bills. They needed to make sure they were getting quality care for these children, at rates they could afford to maximize their resources. They networked with many hospitals and were successful in negotiating a subsidized rate. They managed to work with hospitals so that many fees would be waived leaving Iksha responsible for the costs of chemo, medicines, and the like- hard expenditures that the Hospital was incurring. With these agreements, Iksha would have more money to spend on other children, and to date, 95% of the funds Iksha provides go towards treatment.
The next step was to build awareness. Thanmaya told Megan that there were far too many gaps between vision screening events. There was ignorance amongst the general population (the parents) as well as a lack of awareness even with the local doctors who in many cases were unaware of Retinoblastoma. Iksha began their two-prong awareness campaign of working on general public awareness while also creating workshops at PHCs (public health centers) in Bangalore training 220 doctors on RB protocols.
When it came to addressing the first gap with the general public it was a simple approach. Social media or campaigning in the city was difficult because the people who needed the most help were from rural areas and spoke many different dialects. Thanmaya explained that while city children need help too, they are more likely to find their way to care but the rural children do not know where to go. He was fortunate to find a public relations team who took on the campaign and they decided to begin with print media in the southern and western states. They created awareness in the newspapers in different languages across different states. They were able to address a mass audience using local dialects that were more easily understood. Thamaya pointed out to Megan that in print, issues of health are not often addressed so the papers were happy to have health-related articles. They began seeing an increase in their website traffic.
The second gap to address was with education of the doctors themselves. The training that Iksha accomplished is impressive–training over 220 doctors. One training was designed to target primary health doctors. The city of Bangalore set up everything and provided the training in 5 batches to the doctors from the PHCs. Another training was conducted for pediatricians and was sponsored by the Rotary Club. For this project Iksha had been approached directly by a local pediatrician who heard of the work being done and volunteered to do the training for all the other pediatricians in the city of Mysuru.
It is astounding what founding trustees, program coordinators and the team of volunteers at Iksha have accomplished since its inception in 2010. They continue to keep their focus small so as to keep the care for each child personalized. They have medical teams now in three cities– Bangalore, Pune, and Hyderabad, but their greatest challenge remains that of ensuring the child returns to the hospital for repeated cycles of chemotherapy and follow-up appointments. Since transportation issues are often the primary impediment, Iksha works hard to find chemotherapy alternatives at a local hospital. Thanmaya and Iksha make it their goal that parents have nothing stopping them from bringing the child for treatment. As people around the world have experienced setbacks due to Covid-19, Thanmaya worries that the number of children being seen has been dramatically reduced. Lockdowns prevent individuals from crossing state lines without permission from the police. Iksha’s initiative now is to help these families find their way to care.
KnowTheGlow is proud to highlight the founding team’s work with Iksha, showing how one couple’s desire to help has grown into a full-scale foundation helping some of India’s most vulnerable children battling retinoblastoma through covered end-to-end care so that the focus of parents can remain where it is most needed…caring for and supporting their children through their Retinoblastoma journeys.
