Cody and his sisterWhat would you like others to know about him? 

I want people to know that Cody is my reason. My reason why I do the things I do for the Fragile X community. My reason why I share our story. Cody is hilarious. He is very smart. He LOVES to help others. He is very social. He enjoys being as independent as he can. Cody is well-liked by everyone who is lucky enough to have their path cross his.

What is your favorite thing about him?

My favorite thing about him is that he genuinely cares about everyone. He knows no hate. We could learn a lot from this type of innocence.

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

Fragile X is something I wish did not exist.

What is your advice for newly diagnosed families?

Seek others who can support you and relate to your concerns and celebrations.

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

I want the community to know that we are amongst the strongest and fiercest parents on earth. While we are ready to educate others, fight for what is best for our kids, etc… We also would love to be checked on and supported. Reach out. Ask how we are doing, ask how you can help.

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

KNOWLEDGE IS POWER! Do it! But before you do, know the advantages and the disadvantages. Know the details, how long will the study/trial last? What is expected of you or your child/spouse/etc?

Note: Cody’s grandfather, John Menke, was featured in an earlier Faces of Fragile X story.

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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