“Six weeks back, I got a call from a family, where the mother was telling me that she had her son tested for Fragile x Syndrome. She was devastated, shook and wanted to understand what was happening. It’s not easy to understand this syndrome when the awareness of it is so little in India.

There was a time, when an 8 week pregnant mother called me and told me she wanted to get her fetus tested because her sister hid the fact that her son has the syndrome. The fact that the sister felt the need to hide it because she thought she might give the family a bad name, shows the kind of stigma that most families who are fighting the fragile x syndrome face on a daily basis. I started this organisation with the aim to provide a support system for families affected and it soon evolved into also creating awareness about it. The FMR1 gene which causes Fragile x Syndrome was first discovered in 1991. It is an inherent, genetic condition where usually the women are the carriers. There are people who have the syndrome and then there are silent carriers where the gene skips multiple generations. Around 20% carriers of Fragile x Syndrome, will find it very difficult to conceive even after IVF. I have three goals, three visions and three things I believe to achieve with this organisation. The first and foremost thing is to provide support to the families who are still in the process of understanding and accepting the syndrome for what it is. It is being there for them during the time when they label themselves ‘unlucky’ or ask ‘Why us?’. We have a 24/7 helpline where we always say one thing, “no question, no doubt, no worry is invalid” and that we are always there for them at any time of the day. It begins with telling them about all the treatments, medications, therapies and ways in which they can train their child to be independent and in what ways they can make it better for the child as well as themselves The second thing is to give them genetic counselling and empower them to make an informed decision for planning their next child. The third and final thing is to spread as much awareness we can among women having fertility problems, amongst professionals such as doctors and psychiatrists, and also medical students who are on their way to becoming doctors. This awareness matters because then, you don’t have to wait for a doctor to suggest this test for you, instead, you can ask for it yourself because it is always good to know.

You know, as a child, I always imagined myself to be on the front page of a business magazine. But, life always has a different plan in store for us and I have no complaints. Today, we have over 900 families all over India today and it is beautifully overwhelming. Afterall, there is no greater reward than working from your heart and making a difference in the world. We at Fragile x India try our best to put the pieces together for you, whether it is a broken gene or a broken dream!”

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