“We have a fun relationship, Varun and I. He once told me, “Mumma, I’ll sell you on OLX and get myself a new mumma.” and I replied saying, “You know what, I’ll do the same”. We fight with each other but love each other unconditionally.

I couldn’t conceive for the longest time. Me and my husband, we went through different treatments including IVF, eventually after which, I ended up conceiving naturally. That was when Varun came into my life. As a parent, sometimes you just know that your child is different from others. It was a gut feeling for me. I started to notice the delays when he was 2 years old and couldn’t speak or communicate. I took him to a speech therapist and that’s when the real journey began. At the age of five, he wouldn’t jump and that was unusual, but cognitively, he was doing fine. We visited multiple doctors and they diagnosed him with ADHD and Autism. He studied in a regular school till the age of eight, but eventually, it started to overwhelm him. He would
have bursts of anger and aggression at home because he would hold it all in while he was in school. Things started to get really difficult because I think it was the aggression that was hurting us and him too. He was helpless as well. It was then that we moved him to a special school and it helped the situation quite a bit. We had gone to the best doctors and all we wanted was a proper diagnosis but it was all in vain. Until one day when my husband and I came across an article in the newspaper about a disorder called ‘Fragile x’ where the symptoms they had listed out felt way too familiar. I looked at my husband and said, “Oh my God, this is Varun!”. That night, we sat and read up all about it and we realised that this is the closest we have been to finally getting some answers. I called up Shalini, the Founder of Fragile x India and told her, “Listen, we are not sure, but I think my son has Fragile x Syndrome”. So, we went ahead and got a test done for Varun and it came out positive. It was that moment when I was shocked but felt relieved at the same time, because now, I had clarity about the situation. It was at the age of 10 when Varun finally got diagnosed. We had to get a couple of more tests done and I got myself tested too, because for a boy with Fragile x syndrome, the mother is usually the carrier. I was positive too. That entire process was a struggle but eventually, Varun started to show improvement. Fortunately, I had been doing what the doctors had asked me to do, for a long time now, even before we knew he had Fragile x Syndrome. Of course, we still have our struggles but he’s come a long way.

Today, Varun is a painter and a baker. He gets bulk orders and people love him and his work. He is compassionate, witty and has a smile which lights up my day. He wants one thing and that is for everyone to be happy. The only thing I say is, every kid is capable of learning but at their own pace. Early intervention is the key and holistic approach using therapies, sports, medications acted as the key to improvement, for my son.
All we need to do is, never ever give up.
He loves the movie called The Greatest Showman and to us, he is our Greatest Showman.”

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