Calcutta: Soumalya Banerjee, 6, came all the way from Arambagh and Ridhima Pal, 12, from Malda to perform before an audience at Birla Academy of Art and Culture on Sunday.
Both Soumalya and Ridhima are afflicted with spinal muscular atrophy (SMA), a genetic disorder that affects the part of the nervous system that controls voluntary muscle movement. The condition has failed to rob the children of their zest for life.
Parents of around 11 children with SMA from all over Bengal presented a concert to spread awareness about the disease and advocate the kids' right to treatment.
"An SMA child needs regular physiotherapy and other treatment, the cost of which could run up to Rs 40,000 a month. Most of our kids have been deprived of the right kind of treatment because of lack of awareness. This programme is a step towards reaching out to others for help," said Moumita Ghosh, an optometrist who initiated a parent support group for SMA kids in the state.
Families of Spinal Muscular Atrophy India was floated in 2016 with 17 members to spread awareness about SMA. The group has been fighting for affordable treatment and easy availability of a drug that has improved chances of survival for SMA patients in the US, Japan and Europe. "Importing the drug would cost us over Rs 5 crore. We want the government to approve the drug and make it affordable so that our kids have a better chance at survival," said Moumita, whose daughter Debosmita, 7, impressed the audience with her songs.
"I don't want to stop at one," said the chirpy girl in pink, her skirt hiding her spinal belt.
Arunita Pal beamed with pride as she watched daughter Riddhima perform. "Most of our kids are high performers. My daughter takes keen interest in her studies, loves playing chess and also writes poetry. Yet moving about is such a challenge for her. Some of the kids here have trouble sitting straight," she said.
"Caring for them is a full-time job. And even then we cannot give them quality medical care," said Barun Ghosh of Belghoria, father of nine-year-old Satangshu.
The parent group has written to chief minister Mamata Banerjee and other ministers for help. "We will meet the Governor on July 25. We hope he lends support to our cause," Moumita said.
