- A boy growing up with Duchenne muscular dystrophy has completed schooling and is now a first year student. Aritra Laha, 20, is studying geography in Memari.
- Another young painter, Ansh Metharamani, with Prader-Willi syndrome, a genetic disorder, volunteered for an art and craft workshop. Volunteering requires more tedious work than painting, said an organiser.
Stories of courage and resilience emerged at an Independence Day programme for children and young adults battling rare diseases.
Freedom to Fun — held last Friday — was about giving individuals with rare diseases and their caregivers the time, space and freedom to socialise and enjoy.
“There is social discrimination that those with rare diseases face but they want to interact socially too. To be around people they can interact with makes them feel comfortable too,” said Dipanjana Dutta, a geneticist and scientific adviser to Rare Warriors of Bengal Association, an organisation that works with individuals with rare diseases and their families.
Freedom to Fun was organised by Rare Warriors of Bengal Association in collaboration with Round Table, India and Ladies Circle, India.
“There are children who want to see the sea or play in the park but their they face isolation. So this programme is about having fun, interacting and networking. It is not about any medical intervention,” said Dutta.
The diagnosis of a rare disease is emotionally challenging for parents or families of those with such diseases. The treatment of the disease can be financially depleting for families, too, said those working with rare diseases.
“When families plan to have a child or when a woman conceives they have certain plans, the diagnosis of a rare disease changes those plans completely. One cannot go back to a life they had thought about,” said Suchismita Halder, treasurer, Rare Warriors of Bengal Association.
“At a time when science has advanced so much for a parent to hear that the disease their child has still does not have a cure is not easy for them to accept. It is about the management of the disease,” said Halder.
For many parents, it involves giving up on successful careers because they are the primary caregiver.
Treatment requires admission to hospitals which is physically, financially and mentally exhausting.
“There are parents who have to skip promotion or bigger roles because a lot of their time goes in the treatment of their children which sometimes would require them to take leave for days at a stretch,” said another parent.
Halder has a PhD in biological sciences from Saha Institute of Nuclear Physics and post-doctoral research from University of Kentucky.
She didn’t go back to her career after her son was diagnosed with a rare disease — Alagille syndrome — a genetic disorder.