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Down with Down syndrome, but not out!

Special children participate at ‘Buddy Walk’ event in Patna to spread awareness about the genetical disorder on World Down syndrome day.

patna Updated: Mar 21, 2017 21:18 IST
Ruchir Kumar
Children, along with their parents and teachers, participate at 'Buddy Walk' event to create awareness about Down syndrome, in Patna.
Children, along with their parents and teachers, participate at 'Buddy Walk' event to create awareness about Down syndrome, in Patna. (Santosh Kumar / HT photo)

Like any other child his age, Sankalp Singh, 7, is joyfully playing ‘Motuaur Patlu’ computer game on his mother’s cellphone, when he suddenly begins to cry.

Nahin... Motu ne phir se dadaji ko gira diya (No, the fat man has again tripped my grandfather),” he says, weeping.

“Sankalp identifies Patlu (thin man) in the computer game with his grandfather, whom he adores,” his young mother, Deep Mala, explains. In an attempt to console her child, she quickly resets the game and says, “Koi baat nahin beta, tum phir se try karo (don’t worry my child, you can try again).”

Special children Sankalp Singh (left) and Tapesh Bharadwaj at the Eco Park in Patna. (HT photo/Santosh )

This time, too, the result is no different. As Sankalp begins to wail, he throws away the cellphone in disgust on the lush green grass at Rajdhani Vatika, popularly known as eco park. Like his mother, the cellphone cannot differentiate that Sankalp is a special child - suffering from autism.

Mala, however, knows it all too well and is profoundly patient. She collects her cellphone and diverts the child’s attention to the cluster of balloons put up for the ‘Buddy Walk’, organised by Shankara special school, Delhi, in association with Shivangi Singh, to create awareness about the genetical disorder on World Down Syndrome Day, Tuesday.

Down syndrome, a genetic disorder, is caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability.

Sankalp is not alone at the park. There are some 20 others like him, suffering from either autism, cerebral palsy, Down syndrome or mental retardation. The common thread that binds them is the speech impairment in varying degree.

Atharv, 2, suffering from Down syndrome, underwent an open heart surgery when he was just over two months old to plug a hole in his heart. (HT photo)

Toddler Atharv, all of two years, is the cynosure of all eyes. Suffering from Down syndrome, he has just begun to walk and loves jaywalking in the park. It’s hard to keep one’s hands off his chubby cheeks. But the touch-me-not child does not take kindly to any such advances and becomes cranky.

“Atharv has undergone an open heart surgery at Narayana Hrudayalaya to plug a hole in his heart when he was just two-and-a-half month old,” says his young father, Rakesh (name changed), a jeweller by profession. “He does not appreciate unfamiliar surroundings and people,” he adds. “Atharv loves watching rhymes and cartoon on mobile, but cannot tolerate heat,” adds his mother Rani (name changed), in resplendent red salwaar-kurta.

Tapesh Bharadwaj, 15, is a slow child and a borderline case of autism, says his mother Kumari Poonam. “Till three years of age, I could not fathom he was a special child. I got to know when the school authorities told me that he did not speak for two months after admission and advised me to take him to a special school."

Children participate to create awareness about Down syndrome. (HT photo)

“The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an 8 or 9-year-old child, but this can vary widely,” explains Shivangi.

Composite Regional Centre faculty member Suman Jhunjhunwala says most such children are shy and avoid eye contact. They have problems in interaction.

Director of Shankara inclusive school, N Sujatha, does not appreciate when people sympathise with such children. “The real disability is the inability to see the ability in a person,” she says, as she points to Abhinav Chaudhary, 18, a dancing icon from Delhi, who is enrolled with the Shiamak (Davar) Dance Academy since three years of age. Abhinav has overcome Down syndrome with his dancing prowess.

Borrowing the famous line of former US President Franklin D. Roosevelt, Sujatha sums up the awareness programme by saying, “We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.”