Faces of Fragile X: Ian

What would you like others to know about him? Ian and his mom

I would like people to know that an IQ number doesn’t define who my son is, or how smart he is.

What is your favorite thing about him?

My favorite thing about Ian is that he is very social.

If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be?

I want people to know that if your child has Fragile X, to treat them according to their chronological age and not give in to them just because they are differently-abled.

What is your advice for newly diagnosed families?

Talk to your child’s geneticist, physical therapist, occupational therapist, and speech therapist, in order to formulate a plan for your child’s progress through school and life.

What do you want your community to know about Fragile X?

I want people to know that my son has Fragile X and it’s not contagious. He has different abilities than other children, but he doesn’t need to be treated differently. He is social, which makes him different from children with Autism. Be kind to my son and he will be kind in return. Lastly, teach your children to accept and respect all children who are different.

What advice do you have for parents/caregivers who are considering participating in research studies and/or clinical trials?

If my son hadn’t participated in research studies for Fragile X, I don’t think he would be where he is developmentally or socially.

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.

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By | 2019-07-18T16:20:53+00:00 Jul 18, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Ian