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

Colin is a happy, social kid that has the nickname ‘the mayor’ because he knows everyone!

What is your favorite thing about him?

Colin is loving, determined, and strong.

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

Fragile X is not a bad thing. It’s a challenge and a reward all in one.

What is your advice for newly diagnosed families?

Don’t ever give up. It’s ok and it’s not your fault. Advocate, educate, and persevere.

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

Fragile X is rare. It can be hard to explain but educate yourself. If you run into a parent with a child having a hard time, don’t judge, that child may not be a bad kid just a kid having a hard time.

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

Do it! They are a commitment but when you see the results you will know it’s all worth it!

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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