Avery is beautiful. She has the best curly hair around. She loves animals, routines, her neighbor friends, her cousins, and putting on makeup with her auntie.
What is your favorite thing about her?
She is so smiley and always excited to see her cousin Elliott.
If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be?
It is all over the place and at times quite hard to figure out.
What is your advice for newly diagnosed families?
Be patient, present, and try not to Google everything.
What do you want your community to know about Fragile X?
People with Fragile X Syndrome and their associated disorders have struggles, joy, and love like everyone else. They will need more help than others in almost every aspect of their life. They need all of your patience and kindness to help them have their best life. Remember to hire people that are affected by Fragile X because they want to work, be responsible, be around peers, and love life.
What advice do you have for parents/caregivers who are considering participating in research studies and/or clinical trials?
Go for it. If you child can handle it and so can your schedule do it. We have done plenty and anything to help others in the future to us is a great help.
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.