Varun is a shy, confident, witty teen whose smile just melts everyone’s heart. He is fond of baking, dancing, art, and wants everyone to be always happy.
What is your favorite thing about him?
Our favorite thing about him is how affectionate and caring he is. He is happy with the small pleasures of life and he is fun to be with.
If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be?
Their anxiety plays a major part in not reaching out to people so freely, although they want people around them as they are very caring and loving.
What is your advice for newly diagnosed families?
I would tell newly diagnosed families to not feel too overwhelmed but take things slowly. Our children will teach us a whole lot of patience, resilience, and to be happy with the small things in life. You have lovely people with huge experience to advise you, a lot of resources to help you, and your kids to teach you how to teach them.
What do you want your community to know about Fragile X?
For easier understanding and getting better facilities, it is good to say it has many features of autism, since now there is so much more awareness about autism. Also, we need to let people know that our kids are loving and want to socialize but are shy and anxious. But they are awesome with specific learning styles and knowing this could help them be understood better.
What advice do you have for parents/caregivers who are considering participating in research studies and/or clinical trials?
It will make a huge difference in the lives of children and parents as new medications would help in dealing with a gamut of different issues that can impede learning or having a meaningful life.
About Faces of Fragile X
We asked parents, caregivers, and others to answer a few questions about their loved ones with Fragile X. These are the Faces of Fragile X, and This is Fragile X. If you would like to learn more about Fragile X, start here.