Children with Down’s Syndrome are special indeed

Eighteen-year-old Irwin Fernandez is an achiever by any yardstick. He has won national awards for swimming, paints greeting cards, likes music and dance, is fond of motors and wants to work hard so he can buy a car for his family.

But Fernandez has a disorder that sets him apart from others his age. He has an extra chromosome in his body, ‘21’ that causes Down’s Syndrome (DS). This genetic disorder leads to many problems: low to moderate IQ, problems in physical and mental development, heart ailments, autism, leukaemia, compromised structural integrity, low resistance and biological stress on every cell of the body. But not everyone suffering the disease has every problem or faces it in the same degree.

“If managed well, these kids develop good coping abilities and lead a partial to moderate independent life,” says Dr Dynedeo Chopde, geneticist, specialising in diagnosis and counseling of genetic disorders.

Dr Chopade formed Down’s Syndrome Care Association (DSCA) in 2007 in Nashik. DSCA celebrates World Down’s Syndrome Day on every 21st of the third month of the year signifying three pairs of the ‘21’ chromosome. Member doctors provide free check up for member DS kids and counsellors lend them emotional support.

The doctor points out that DS is usually diagnosed late. It was when 18-year-old Vijay Patil was seven that his parents realised that he had a problem. “I was shocked but we put him in a special school where he learnt skills like packing and making paper bags and files,” says his mother Yogini.

But Patil’s real forte is dancing. Displayed all over the house are trophies he won through his years in school after he took to dancing. Patil is a trained dancer who has passed an exam in Bharatnatyam. He is now seeking training in folk, modern and western dance.

Smita, Fernandez’ mother, says when the problem showed up, schools refused to admit Irwin. The one school that agreed to take Fernandez buckled under pressure from other parents and kept him out. It was then that Smita trained to become a special educator and assisted her son. “I had read about success stories with DS kids, I decided that my child would be one of them,” she
says.

Smita’s effort and his sister Rochelle’s speech lessons paid off. Over the years, her son took to swimming and the sport became a passion with him. “I have strong shoulders and I can swim fast,” he says proudly displaying his muscles.