‘Golden Butterflies’ offers emotional, financial support to children with terminal illnesses

The initiative, a registered charitable trust, will offer complete assistance to children, who are suffering from terminal illness, and their families — including emotional and financial support. 

With YRG Care and Sri Ramachandra Hospital already on board, the NGO is also in talks with Kanchi Kamakoti Child’s Trust Hospital. The trustees and the volunteers, called ‘wings’, have conducted a series of conferences and workshops in Hyderabad and Kerala. One of the trustees, Stella, said, “We wanted to do something specific and for children. When we started talking to Aneka Paul, who is pursuing a PhD in palliative care, she told us how paediatric palliative care was not touched upon. Children were our focus from the beginning.” She added that while they would assist chronic illnesses among children, it will largely concentrate on terminal illnesses — cancer and AIDS. Nearly, 20 per cent of those with leukaemia and AIDS are children. 

One of the modules of the care will include Serious Fun, a concept conceived by the legendary actor Paul Newman. The camp for kids will be conducted twice a year, apart from therapy through art.

Dr Julius Scott, professor of paediatrics and HOD, Department of Paediatric Oncology and Haematology, Sri Ramachandra University, said that the initiative would fill the lacunae in the field of palliative care. “There is a vast difference between adults and children when it concerns all disciplines of medicine. There is a difference in neurological illness in 10-year-old and kidney related illness in a 16-year-old. And palliative care is underdeveloped in our country. Among states, Kerala still leads in palliative care with home visits available.”

He added that in paediatric oncology, the risk is high and there is not much support. “What is the option for those who suffer pain? Even hospitals prioritise cases that can be cured. The belief in the community is if one cannot be cured, they should just quit all kinds of treatment. Those with terminal illnesses need to be supported financially and the community should be educated. The children’s parents should also be offered support through counselling. We have a philosophy in medicine — ‘cure sometimes, relieve most often, comfort always’. An initiative like this can create a revolution, if supported by the health care system and the government.” he said.