Dr Shakuntala Churi, paediatrician |
The Sugwekars’ son has cerebral palsy, and they started Sangopita in 2003 to provide therapy, education, healthcare under one roof.
Twenty-five years ago, Ravindra and Sujata Sugwekar had premature twin boys, born three months too early. Days later, one infant died, and doctors told the couple the surviving child would likely be bed-ridden for life if he was not given daily physiotherapy. The boy remained on a ventilator in Parel’s KEM Hospital for a whole month. He had cerebral palsy.
Today, the retired bank employee and his wife run a full-services residential home for physically and mentally disabled children in distant Badlapur in Thane district, called Sangopita.
During the seven years that Sujata took little Akshay everyday, by train from Badlapur, to a physical rehabilitation centre at Haji Ali, she learnt what parents of children like hers needed — a single space where multiple kinds of therapy and healthcare is provided by experts, with educational facilities also under the same roof.
At 7, Akshay could not even sit up on his own, let alone walk. The couple began to worry about his future.
“In regions like Badlapur, for poorer people who cannot afford cabs or cars, it was so difficult to go by train all the way to south Mumbai for therapy,” Ravindra says. They did a quick survey in Badlapur through the municipality and found there were at least 189 children with similar disabilities. “Twenty years ago, these kids would not even be brought out of the house and would often be left in a corner.”
The couple invited these parents to join them in trying to build a local initiative for children with special needs. With four or five other parents, they started Sangopita in 2003.
Keeping the children out of the home for five-six hours a day brought relief to the mother, they found. They then took a loan and other financial help and purchased a small plot of land in Bendshil village, 8 km from Badlapur, in a quiet and hilly spot, to build a shelter for the children.
Twenty years later, Sangopita is home to 62 children who reside in the facility, have access to special educators, physiotherapy, occupational therapy, speech therapy, medical facilities, a mini-hospital, vocational activities, etc. The special education includes skills such as recognising names and visuals, some basic mathematical skills, painting and craft.
The Sugwekars say with close observation of each child, it is possible to understand what activity each enjoys, and keep them engaged in that. During festivals, Sangopita markets products made by their children to corporates and others as gifting solutions.
The children are from different parts of India, including Jharkhand, Pune, Jalgaon Buldhana and elsewhere. Some are autistic, others have cerebral palsy, physical disabilities; some suffer repeated epileptic fits, including Akshay.
A 24-hour nurse and a retired government doctor from Bihar who wanted to volunteer his services are available round the clock. Through tie-ups with local hospitals, medical camps and specialists’ check-ups are also conducted.
Sugwekar says the payment structure is flexible. “While our cost is about Rs 16,000-Rs 18,000 per month per child, some parents may afford only Rs 7,000-Rs 8,000, some even less,” he says. About 75% of their costs are covered by donations raised by the couple.
Festivals and birthdays are celebrated together. “We try to foster a sense of joy in being together,” Ravindra says. Some children’s parents visit less frequently than others, and the Sugwekars step in to provide additional care wherever needed.
Sangopita takes its name from the word ‘Sangopan’, or upbringing. “We offer lifetime residential care, a complete care system marked by our love and the children’s dignity,” Ravindra says.