Whats App group titled as “Delhi Trisomy 21” managed by Ranjan sharma,50,a professional photographer , is no less than a beacon of hope for parents whose children are digonosed with Down Syndrome . Ranjan’s hands remain in continuous motion to put an end to all the doubts aired by parents in that whats app group . It was after Ranjan’s daughter ,Vilina ,14,was diagnosed with down syndrome way back in 2003 ,that he made a resolve to help other parents .
“Down Syndrome also known as Trisomy 21, is a genetic condition marked by an extra copy of chromosome 21 .This chromosomal condition is associated with intellectual disability,a characteristic facial appearance ,and a week muscle tone(hypotonia),”says Dr I.C Verma,a genetic medicine specialist at Sir Ganga Ram Hospital in New Delhi.
”After this news broke out to us ,my wife went into the state of depression,”says Ranjan . The couple was dismayed when doctor broke into a statement that,”Don’t expect much from a child, she will remain in a vegetative state.”
Amid the pall of gloom hovering over them ,Ranjan was resolute in finding a way out and says, ”We searched a lot about this disorder and got in touch with many experts based abroad, who unlike many of Indian doctors ,who just fire in air ,”added Ranjan.
Ranjan Sharma along with her daughter Vilina and his wife
Drawing out conclusion from his experience, Ranjan went on to add “Medical fraternity gives all the wrong information about this disorder, they paint a very gloomy picture .” Now after 14 years of bumpy and yet enjoyable journey the couple has successfully managed to smash the string of misconception pertaining to this disorder.”
“There are very few doctors who know the intricacies related to Down syndrome,”says Dr I.C Verma.Throwing light on unawareness among doctors Dr Verma adds : ”Pediatricians propagate false conception about this genetic disorder transcending all boundaries of absurdity when they ask parents to have no expectation from the child and declare her mentally retarded.”
Verma infering from his extensive experience dealing with Down Syndrome said, “If proper care is given then the child can lead a normal life, but it is wrong to say that these kids can’t attain much in life.” Talking about possible reasons for this disorder he went on to say ,”Probability of having a child with down syndrome is higher in women conceiving at high age, say above 35 ,That’s why Arab countries are home to huge Down Syndrome patients because they keep on having children till the fag end of their life.”
Kavita Baluni and Himanshu Kakatwan along with their daughter Veda
Telling their peculiar story ,Kavita Baluni and her husband Himanshu Kakatwan ,a software professional said ,”Having a biological child was never on our mind, but giving home to one was always. At that time we made a resolve to adopt a baby girl with Down syndrome in India.”
The journey of the duo in finding the 15 month baby, Veda ,with down syndrome was not less than a fortunate stroke. When Kavita and Himanshu started frequenting hospitals for Veda’s treatment they had to grapple with the same set of problems all parents in India have to confront with.
Kavita, while summing up her troublesome experience with doctors said,”We took Veda to a hospital where well known doctors after checking her thyroid level told us to take her home as everything was normal.”
The couple, feeling anguished about the ignorance of doctors, say ,“All doctors failed miserably in figuring this out that this level of thyroid is leading to aggravating problem ,it was after becoming part of that whats app group that took us out from the web of apprehensions and apprised us that Thyroid level falling in normal bracket is abnormal for a child diagnosed with Down Syndrome .”
”My daughter Babbli was diagnosed with Down Syndrome in 1981. After realizing that even doctors miserably failed in analysing the underlying problem ,I took it as a challenge and went on to earn PhD in psychology, “says Dr Rekha Ramchandran,Co-founder of Down Syndrome Federation of India ,only organisation in entire south east Asia catering specifically for Down syndrome disorder.
Summing up her experience with medical fraternity she says ,”Whenever there is low thyroid level in a child one should take her to proper endocrinologist , But in India they have their own set of limitations as the lack of study and research by them make it obvious on their part to come up with false information.”
Discrimination High in the Spotlight
Seven year old ,Dron Garg ,diagnosed with Down syndrome is studying in Spring Dales Public School ,Pusa road ,New Delhi , this could seem as an ordinary instance, but extraordinary legal battle fought by his mother Dr Amita singhal ,41,a cardiologist,to get him admitted in school is commendable.
” It was in Year 2014 when I was running from school to school for nursery admission of my son with Down syndrome, I noticed that all Child With Special Needs (CWSN) Categories were clubbed with Economically Weaker Section (EWS) under a blanket category. “said Dr Amita .But the legal victory for Dr Amita did not come easily. She had to resort to the legal way .And after filing a PIL in Delhi High Court .She got court ruling in her favour directing 3% separate reservation for CWSN even in private unaided schools.
But her ordeal didn’t end there.Amita subjected to the numerous problems associated with nurturing a child with special needs she adds;”As a society we have miserably failed in accepting these children as normal, that’s why we had to stride on the way full of thorns to get our child admitted in school, that reflects the narrow outlook of society towards these children.”
”It was in 1976 ,when my second child was born and after two days, we got to know that he is diagnosed with Down syndrome ,at that time when awareness about this disorder was quite pathetic inspired me to take lead and do something in this direction,”says Dr Shanti Auluck,a psychologist and Chairperson of Muskaan,an adult training centre for people with intellectual disability.
Dr Auluck ,countering the ridicules made by society about intelligence of these children ,Auluck says that ,”Intelligence is of many kinds ,These children are full of concrete intelligence making them quick on the uptake .At Muskaan ,we are providing vocational training to these children,and they are doing exceptionally brilliant in this .”
Defying all the misconceptions and discriminations ,these special kids are making enormous headways in their own fields ,be it Villina , who is making stride in swimming and Dancing or be it aBabbli ,who is enthralling the audience the world over with her Dancing skills.
Dr Auluck says that ,“To quell this stark discrimination prevalent in society only a handful of organisations are doing work at ground level ,Govt is just doing work, that confines to the registers and never transpires into reality.”
Rajat Mishra is a freelance journalist and a student pursuing Master in Convergent Journalism at AJK Mass Communication Research Centre , Jamia Millia Islamia ,New Delhi.