Some of you will already know that one of our Self Help group heros, Mainudin Dafali, passed away at the end of April this year. He had been unwell for some time with cancer of the tongue and had been in India for treatment. He leaves behind his new wife Sakila, and their baby daughter Upsana.
Mainudin was a key figure in our Stigma Elimination Programme (STEP) from 2002 onwards because of his enthusiasm and commitment to helping people who were, like himself, affected by leprosy. Mainudin contracted leprosy when he was a boy and was given poor medical treatment so that the disease was not dealt with effectively. This led to disfigurement and subsequent rejection by his family and community. Mainudin was one of the NLT Lalgadh Leprosy Centre’s early patients in the 1990s, and he needed lots of help to learn how to care for his damaged body. He saw how many other patients needed help through their despair and distress at being diagnosed with leprosy and he became an encourager and leader amongst them. When the self-help groups that NLT established began to grow in numbers, he was elected to be the leader of one of the groups, which soon became the largest and most active and successful. He was then elected to be the president of the Federation of Self-Help Groups in Dhanusha district and continued in that role until the Covid pandemic. In 2011 Mainudin was awarded the Wellesley Bailey Award, which honours those who have made extraordinary contributions to society through overcoming the social stigma and physical challenges of leprosy and Mainudin was absolutely deserving of this recognition for all his work in this area. He therefore took his first ever flight on a plane and his first visit to another country (Thailand), accompanied by NLT’s Mr Dambar Ale to support him as he received the award.
However, Mainudin’s home life was rather lonely as he lived with his relatives and could not have his own family as his resources were limited, and he was physically quite badly disabled with one prosthetic leg, and both hands quite damaged. In 2019 NLT helped Mainudin to buy some land and build a small house and this was the catalyst for him to find a wife, a lady also affected by leprosy. Mainudin and Sakila married on 29th December 2019 at his new house, and a baby was due in late 2020. In a sad turn of events, Mainudin was diagnosed with cancer of the tongue in October 2020, and began treatment in India in early 2021. Despite all hopes for a good outcome, Mainudin passed away around the end of April. At this stage we are not sure whether Mainudin died from the cancer or the treatment, or even from Covid – which in India was serious.
Mainudin’s widow Sakila and his daughter Upsana, are living with Mainudin’s mother at the moment and are as well as can be expected. Do please remember them in your prayers.
Mainudin will be greatly missed by the many self-help group members that he has championed over the last fifteen years.
Thank you to all those who have been a part of Mainudin and Sakila’s journey, by praying and by supporting them at various times in their difficulties. We will keep you updated with Sakila and Upsana’s progress.