Faces of Fragile X

Fragile X syndrome is an inherited intellectual and developmental disability, and each individual is — well, individual. They are Xtraordinary in their own way.

Below are just a sampling of individuals with Fragile X — a gallery we call Faces of Fragile X. Click on each photo to learn more about them. And, remember, one day you may meet someone with Fragile X syndrome, or you may already know someone. They may be shy, anxious, have difficulty making eye contact, and have short attention spans, but they want to be social. They want to be your friend. Be friendly, patient, and talk to them. They will warm your heart.

Learn more about Fragile X syndrome and support Fragile X awareness, education, and research with a donation.

Face of Fragile X: Logan

By |2019-07-12T12:02:06-04:00Jul 12, 2019|Faces of Fragile X|

What would you like others to know about him? Logan is 10 years old and was diagnosed at 15 months old. It hasn’t been an easy road but with help from family, friends, and his teachers he has progressed and learned so much.

Faces of Fragile X: Avery

By |2019-07-05T13:26:40-04:00Jul 5, 2019|Faces of Fragile X|

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. She is so smiley and always excited to see her cousin Elliott.

Faces of Fragile X: Nicholas

By |2019-07-03T13:19:47-04:00Jul 3, 2019|Blog, Faces of Fragile X|

What would you like others to know about him? He is helpful and very patient when we drag him all over the place. What is your favorite thing about him? His smile is amazing and he is so fun to hang out with. If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be? People with Fragile X have a very genuine heart. School can be a challenge but if you stay involved you can make it through. Once you get through the school years it is easier for them to be themselves.

The Friendship of Julian and Jonah

By |2019-04-23T09:55:57-04:00Apr 15, 2019|Faces of Fragile X|

My son has Fragile X Syndrome and I often felt sad that friendship -- which I value enormously -- was something Julian didn’t even notice. He didn’t miss it; I missed it for him. After all, wishing for friends for your kid is pretty universal. Inclusive schools and communities are great on a societal level, but maybe not enough on a personal level.

My Boys and Fragile X

By |2022-08-04T14:50:13-04:00Jul 1, 2014|Faces of Fragile X|

"The results of genetic analysis confirm the diagnosis of Fragile X syndrome, " said the pediatrician. Years later, those words still bring me to tears. We are blessed with two sons, Nathan, 29, and Jason, 24, who both have Fragile X syndrome. For those of you who have never heard of Fragile X syndrome, it is the most common cause of inherited intellectual disability and the most common known genetic cause of autism.

Finding Hope After Our Diagnosis

By |2022-08-04T15:04:12-04:00Jun 30, 2014|Faces of Fragile X|

Our only child, Kenny, was diagnosed with Fragile X syndrome (FXS) at the age of four. When this happened our family was not only at a loss for words, but at a loss for what we could do for our son and for his future.


By |2017-07-31T15:34:57-04:00Aug 20, 2011|Faces of Fragile X|

My son Alex was diagnosed with Fragile X syndrome at the age of 2 and half years of age and i was scared to death and new nothing about it. I later found out that [...]


By |2017-07-31T15:34:56-04:00Aug 10, 2011|Faces of Fragile X|

My two babies are now 12 year old Margaux and 9 1/2 year old Garrick and what a wicked ride! We get to spend 6 weeks each summer driving from Florida to Massachusetts and Maine [...]

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