“He wants to make a big name for himself in science,” beams Sujata Dey (38) about son Tuhin, who is affected by arthrogryposis multiplex congenita (AMC), a disorder that develops during a woman’s pregnancy and reduces the mobility of joints of the baby’s hands and legs.
The 17-year-old wheelchair-bound boy from West Midnapore district of West Bengal holds a pen in his mouth to write and operates gadgets with his chin. He is in Kota for engineering entrance coaching and dreams of getting into an IIT to become a cosmologist like the famed theoretical physicist Stephen Hawking who is affected by amyotrophic lateral sclerosis (ALS), a motor neuron disease that has kept him confined to a wheelchair, forcing him to depend on a computerised voice system for communication.
“Since his birth in 1999, Tuhin has undergone more than 20 surgeries. But that did not deter this boy from studies,” Sujata says, adding that he’s an “extraordinary” student.
Despite the 90% handicap, which doctors have said is not curable, Tuhin wrote his Class 10 exam this year without the help of a writer or using extra time given to students with disabilities. Now he is waiting for the results.
A student of Kendriya Vidyalaya at IIT-Kharagpur, Tuhin got the National Child Award for Exceptional Achievement in 2012 and Best Creative Child Award with Disabilities in 2013 from President Pranab Mukherjee.
Tuhin says he is interested in cosmology and computer science, and idolises Hawking. “I want to get into IIT and become like him one day,” he said.
Doctors say Tuhin’s disorder is different from Stephen Hawking, but what the two have in common is that the brain doesn’t get affected. “You need brain, not brawn, to get ahead in life. This congenital disease does not affect intelligence and as long as he can use a wheelchair to move and communicate, he will remain highly-functional,” says Dr Yash Gulati, senior consultant orthopaedic surgeon, Indraprastha Apollo Hospitals, and surgeon to the President of India.
Sujata gave up her job in the education department of the central government to be with her son full time. “Tuhin is our world. Nothing is bigger for us than him,” she said.
Her husband Samiran deals in real estate business but theirs is a middle class family, and both of them have moved to Kota to be with Tuhin for the next two years as he prepares for IIT entrance.
Tuhin doesn’t have siblings. “We didn’t plan a second child lest that should give Tuhin some complex,” his parents said.
Dr Somnath Roy, physician in Kharagpur being consulted by Tuhin’s family since his birth, said AMC is not curable and he will remained specially-abled for life. “However, since Tuhin’s brain is fully developed, he can study,” he said.
Allen Career Institute, the coaching institute that has admitted him, has waived his full fee of Rs 1.18 lakh a year.
“We promote exceptional talent and offer them free coaching so that they can inspire others,” said institute’s director Naveen Maheshwari.
A West Bengal based private trust Deenabandhu Trust has gifted a laptop and telescope to Tuhin and is financing a documentary film on him, being shot by filmmaker Monalisa Dasgupta. The trust has also assured financial assistance in the future.