Ajinkya Deo and wife want to cater to needs of children like their daughter, who suffers from a brain disorder, called global development delay
After struggling to raise their daughter who is suffering from a medical condition that delays brain development, Marathi actor Ajinkya Deo and wife Arti have decided to open an institute to help parents cope with children who have similar disorders.
Their 14-year-old, Tanaya, has a condition generically called global development delay, a brain disorder affecting the senses in the human body.
Tanaya, now 14, can do a lot of activities she was earlier incapable of. Her mother, Arti, says she is much more independent now. Actor Ajinkya Deo talks about the school he wants to open
But after the Deos saw her respond positively to a treatment programme they learnt of at a US institute when Tanaya was nine, they decided to approach the BMC for a plot of land to start a similar institute for parents of such children.
Said Ajinkya, "My wife and I want to begin this school to make a difference. When our daughter was seven-months-old, we visited some of the best neurosurgeons in the country.
They told us that there is no hope."
But after the regimen they learnt at the five-day crash course at the institute in New Jersey, they saw some development in her.
Last week, the couple gave a presentation to the municipal commissioner and Standing Committee Chairman, Rahul Shewale, on the school. Said Shewale, "With this endeavour, the Deo family wants to help brain-injured children and their families.
We have given them a list of locations in the western suburbs between Juhu and Oshiwara where they can start the school. We would obviously give them the land or a vacant BMC structure on lease, but at a lower cost as the institute would be run by a charitable trust."
"The municipal commissioner seemed excited about the school. We would try to work it out so people, those from other cities as well, may benefit from this treatment," She wale added. Raising Tanaya
Doctors cannot pinpoint the problem with Tanaya, as all her medical reports are normal. "The disorder has not been diagnosed yet. Global development delay is a general term given to such conditions," said Arti. "She did not cry when she was born. She did not show any mobility.
When she was left on her stomach, she would not turn on her own. When she was two, I found a book by Dr Glen Doman in the US. It gave me insights into the things I could make her do, certain exercises. I saw the result. She began crawling and creeping. I thought she would develop normally, but she didn't."
But the Jersey institute helped. Tanaya is currently undergoing a rigorous 9 am-6 pm programme, which includes crawling for 800 m, creeping, brachiation (arboreal locomotion), exercise involving repetitive movements to stimulate the brain, and so on.
Immobile at the age of two, she now walks and is independent. Ajinkya said, "We would charge a minimal amount from parents so as to meet administration costs.
A larger amount from our own charitable trust named after my grandmother, Sushilabai Nanasaheb, would also sustain the trust. The aim is to make it possible for parents to see their brain-injured child move, talk, react and enjoy themselves." Autism institute
The Deos have a precedent of sorts back n New Jersey.
Akhil Autism Foundation founded by Manisha and Mahesh Lad in 2008, whose only son Akhil was diagnosed with autism when he was 18 months old, have passionately dedicated themselves to the cause.
They started the NGO after attending an institute in the US that helped their son.
Lad said, "It was very difficult to motivate Akhil." But, said Manisha, "Akhil is very receptive now; he understands concepts and can focus. A day will come when he will recover completely."