An eight-year-old girl from Burdwan travels to Park Circus three times a week for a four-hour dialysis session. She wakes at 3am to catch the 4.10am train to Sealdah station.
And this is a routine she has followed for the past three years while battling a chronic kidney ailment.
Yet, despite the toll, the Class II student enrolled in a cultural programme organised by the Institute of Child Health to mark World Rare Disease Day on Saturday.
She danced to the song Bum bum bole, having learnt the steps from the internet.
“I was not keen because it would have been a physical strain for her. But seeing her enthusiasm and interest, I couldn’t refuse,” said her mother, Israt Parveen.
She was one of nearly 60 children battling cancer, kidney ailments, rare diseases, poverty and with special needs who took the stage at Madhusudan Mancha.
The children sang, danced and performed to resounding applause.
“A disease might be
diagnosed as rare, but for a family with an affected child, it is not rare. It is a battle they fight every day,” said Apurba Ghosh, director of the Institute of Child Health. “Their talent and abilities need to be showcased to a wider audience to build social awareness.”
The institute runs the Nivedita School for Special Children, where children with special needs are engaged and trained in art, craft and other creative activities. The Mrinalini Centre for Cancer Research is also a unit of the institute.
The struggle is not the children’s alone.
An 11-year-old girl diagnosed with leukaemia in 2025 has had to spend long periods in hospital. She had just been promoted to Class V when she was diagnosed, and her life changed abruptly.
“She could not go to school or play with her friends. Even now, we are reluctant to send her because her immunity is low and we don’t want to take chances,” said her mother, Tanushree Roychowdhury.
On Saturday, the 11-year-old performed Ore grihobashi and Ekla cholo re. She has always enjoyed singing and has previously performed during Mahalaya celebrations, her mother said. This time, her treating doctor encouraged her to participate.
Ghosh said that parents often give their all without expecting anything in return.
“For all parents, it comes from a sense of responsibility towards their children. That responsibility becomes even greater when a child is fighting a disease or has special needs,” he said.
Events like these also help the hospital raise funds from individuals and organisations, which go towards treatment and the overall well-being of the children.