#CelebratingDownSyndrome – DSFI Co-founder Rekha Ramachandran is a life changer for families in India

As co-founder of Down Syndrome Federation of India and and mom to a young woman with the genetic condition, Dr Rekha Ramachandran is one busy lady. Yet speak to any parent with a child with Down Syndrome and they talk about her personal touch.

Tough and compassionate. Almost every parent we spoke to about Dr Rekha Ramachandran uses these words about her. As Co-founder of Down Syndrome Federation of India (DSFI), Dr Rekha, who is based in Chennai, has personally touched the lives of many parents.

Surat-based Meghana Surana met Rekha when her daughter was about two months old. Meghana was struggling to come to terms with Unnati’s diagnosis. “The first few days I didn’t listen to a word she was saying. All I did was cry but she never stopped me. Rekha aunty knows what’s on your mind. She is always answering your questions, even when you haven’t asked them”.

Today, Unnati is nearly 15 years old and is making news as an emerging disability rights advocate. She was chosen by the United Nations to speak at an event to mark World Down Syndrome Day this year. “Rekha aunty is the person behind whatever I have done with Unnati. She is a tough woman, a dynamite. She is always fighting for us, selflessly”.

Fighting for integration for all families

It’s a remarkable quality when you consider the many battles Dr Rekha has fought on the personal front. Over 30 years ago, when her daughter Babli. Was diagnosed, there was no support or awareness about Down syndrome in India. She fought to change this for everyone.

Forty years ago, even talking about Down syndrome was banned. My response to all the negative things doctors said was, ‘So What?’ I decided to start by finding out how many children had been diagnosed with Down syndrome in children’s hospitals in Chennai and discovered they were all stamped as Mongol. – Dr Rekha Ramachandran, Co-Founder, Down Syndrome Federation of India & Chairperson, Down’s Syndrome Federation of India (Tamil Nadu)

Labels and attitudes that she fought to change. “I fought the government, the National Trust Act and said I do not like that labelling. It took a long time for the change to happen to intellectual disabilities. I don’t like that either. I don’t see the need for labels”.

In the early 1990s she opened Mathru Mandir, a centre that provides rehabilitation, support and therapy for people with Down Syndrome. Her fighting spirit empowers every family that comes into contact with her.

Helping families accept & understand their children

“My daughter was about nine months old when we met Rekha ma’am”, says Kevin Fertle, a Chennai-based working professional. “We were not in a good state in terms of understanding what next to do for our child”. Kevin’s wife was also depressed. “She helped my wife a lot, gave us every possible help, a good support system and made us feel that we could handle this. After meeting her, I saw that my wife was advising new families who came to the centre and was so positive. It’s all because of the way Rekha ma’am talks to families”.

Pune-based Shweta Runwal, parent to an eight-year-old with Down syndrome, found Dr Rekha on a WhatsApp group. “I was struggling with something and she called me. She helped me through many things, and we stayed in touch. She has changed my perspective towards not just my daughter, even myself.”

From counselling families to developing health modules, Dr Rekha has changed the landscape for Down syndrome families in India. The challenges, she says, are still many. “We are still fighting a battle especially in the eastern zones to make sure children don’t get sent to special schools. In Chennai, our children go straight to mainstream schools after early intervention. If any school refuses, we go to the government”.

Her efforts led to Tamil Nadu hosting the first national sports event for people with disabilities in the 90s. “We had people with different abilities taking part in every sport for the first time”. Every 10 years, Dr Rekha sets a new target. “The current one is education. We are collating information from every state to find out the barriers children are facing”.

In the midst of all, she continues to remain an anchor for families. “We have a WhatsApp group and if any parent writes saying their child has a surgery, she will be on the next flight”, says Meghana. “Given her age, that is quite amazing. We call her for the silliest of things and she will listen”.

Ask Dr Rekha where she draws her inspiration and energy from, and the answer is Babli. “I learned everything from my daughter. Every child is a person with potential and how you tap into that is in your hands”.

Also Read:

• Dancer, swimmer, yoga teacher – Babli challenges every notion about Down syndrome