What makes Teena Xtraordinary to you?
She’s so happy.
Special Facts
- She loves her bottle and rice cereal
How has the NFXF helped you or your family?
So much research.
Share your story! Who is an Xtraordinary Individual in your life? It could be a teacher, sibling, or someone living with Fragile X. We share these stories on social media to inspire the community and help raise awareness for Fragile X. There are Xtraordinary Individuals everywhere.
You can upload a photo, video, or both. Check out all the videos on our YouTube channel.
Nominate Your Xtraordinary Individual
She’s so happy.
Special Facts
So much research.
Mila (3) and Alex (1) fill every day with so much fun, love, and happiness. Alex has been smiling since he entered the world, and his soul is pure kindness. Mila has the most infectious laugh, she finds fun and devilment in everything she does.
They both brighten our days beyond measure, and we are so lucky they chose us to be their parents. We are so proud of them, and we can’t wait to see what the future holds for them. One thing we know for sure is that they will continue to make the world a brighter, happier, and loving place to be.
Special Facts
He loves unconditionally, is very genuine, and you know where you stand. He is empathetic and loves traveling and hotels. His attention to detail is unbelievable. Loves his vacations, road trips, and friends.
Special Facts
I have, as a parent, become aware of how it may affect different areas of their lives and the resources available as well. And continue learning
Zeke embodies a different kind of strength. ❤️ His journey reminds us that strength doesn’t always look like independence, reaching milestones on a typical timeline, or doing things the way the world expects. Sometimes, strength looks like growing at your own pace, finding joy in the little things, and showing up in a world that wasn’t always designed for you.
Zeke is expanding our understanding of what a meaningful, beautiful life looks like and reminding us that progress doesn’t have to look typical to be extraordinary. He doesn’t have to overcome his disability to be remarkable. He is extraordinary exactly as he is, and the world is better for having him in it.
Continue Reading and Watch a Short with ZekeMy son is amazing … as I recently learned he has a rare mutation of Fragile x, which caused him to have autism traits … it’s been more of a learning experience for both my son and me, but he has been one amazing teacher and tour guide thru this all … he smiles every day with no fear in his heart.
Special Facts
He is a very kind and loving young man. He has progressed way more than we expected. Everyone who meets him loves him.
Special Facts
The Foundation has been important because of the information available.
He is improving in all his activities, works hard at McDonald’s, likes his friends, and sees life with happiness. Always looking for ways to help his friends and in the house.
Special Facts
Well, in the beginning of the diagnosis, the information on the website is really good.
Watch a Short of MichaelCurran is the most down-to-earth and grounded person I know. He loves life and laughter, and always sees the best in people and situations. His humor is contagious, and he has grown into such a fine young gentleman.
Special Facts
The ways that Knox adapts to life is xtraordinary. He is non-speaking currently but communicates so much through his AAC device, sign language, body language, etc.
Special Facts
By raising awareness and helping bring our community together so we feel seen and supported (:
Watch a Short of KnoxMy son was diagnosed with Fragile X syndrome full mutation, and from the moment I learned what that meant, he began teaching me things no classroom ever could. He experiences the world with an intensity and sensitivity that most people never access — he feels joy deeply, he loves completely, and he faces challenges with a quiet persistence that humbles me every day.
As his mother and a Fragile X premutation carrier myself, I have walked this journey from both sides as someone whose own genetics are part of this story, and as a caregiver navigating a system that rarely has resources for immigrant families like ours. We came from Bangladesh. We did not know anyone else who had heard of Fragile X. We found NFXF, and for the first time we did not feel alone.
My son is extraordinary not despite his diagnosis but because of who he is fully, completely, and on his own terms.
Special Facts
NFXF gave us knowledge when we had none, community when we felt isolated, and hope when the diagnosis felt overwhelming. As a Bangladeshi immigrant family, finding resources that helped us understand and navigate Fragile X in an unfamiliar country was life-changing. NFXF has been our anchor.