Special Facts
Levi’s high energy and infectious laugher is loved by all. He loves music and all things Taylor Swift.
Xtraordinary Individuals
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
Xtraordinary Stories
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What makes Varun Xtraordinary to you?
He is very loving, very hardworking, has a great sense of humour.
Special Facts
- He loves everything American, be it Jimmy Fallon or Britney Spears or Broadway
How has the NFXF helped you or Varun?
Visiting the conference gave us so much more clarity on Varun’s condition, medications, and research work being done, and we met up with the most astonishing doctors and experts in FX.
What makes Jared Xtraordinary to you?
He’s hilarious! As shown here. He’s having a giggle session while swinging with his tiny nephew, who is 3.
[Turn up the volume!]
Special Facts
- He LOVES people!
- He LOVES to end the day with Mom reading to him.
- He LOVES the color green.
What makes Varun Xtraordinary to you?
He is adorable and very affectionate. He has a zest to keep learning and growing and is extremely diligent, hardworking. He is a coder, a baker, a photographer, an artist (caricature artist and doodler). He loves making videos, he does his research, and he loves everything Disney and has made this video.
Special Facts
- He loves to draw, sing, and dance.
- He likes pizzas.
How has the NFXF helped you or Varun?
When we got our diagnosis and came to the NFXF conference, we got so much help, clarity, and a totally different perspective on Fragile X.
What makes Ted & Matthew Xtraordinary to you?
They have the most fabulous lives, amazing sense of humour and are also both so sociable and funny and caring!
Special Facts:
- Ted loves farming and all farm machinery.
- Matthew loves cars and all things mechanics.
- They are both excellent swimmers!
How has the NFXF helped you or Ted & Matthew?
We can share our experiences with other families with pride, and therefore, we are not alone in our challenges or in our victories.
What makes John Xtraordinary to you?
John is an amazing son and brother to his four other siblings. His empathy and love for his family are unique. We love watching him grow and develop.
Special Facts:
- John loves Air Dancers (a.k.a. Balloon guy).
- He loves animals.
- He loves matchbox cars, and cheese pizza. Plain cheese pizza ;).
How has the NFXF helped you or John?
Reading ongoing studies and seeing other families. I hope to go to a function of Fragile X. We need to support each other.
What makes Carlyn Xtraordinary to you?
Carlyn is an overcomer. She’s the hardest worker I know and (*almost*) never complains. She’s funny, kind, compassionate, and loves her people. When she knows I’ve had a hard day, she texts me to check in. Everyone should have someone like Carlyn in their life.
Special Facts
- Carlyn represented Arkansas in the Miss Amazing pageant series in 2019.
- Carlyn loves to play Just Dance for exercise.
- Carlyn was recently selected to represent Arkansas’ Special Olympic swim team. Her times are consistent with S.O. World Gold Medal winners.
How has the NFXF helped you or Carlyn?
NFXF has helped connect Carlyn with research opportunities and specialty care. We are so grateful for the organization and the support they provide the Fragile X community.
What Makes Davis Xtraordinary to You?
Davis is the light of our lives! He always makes us smile! He loves to sing on microphones and play with inflatables. He keeps us laughing and is always sweet, kind, and caring.
Special Facts:
- Davis’s favorite color is blue.
- His favorite food is chicken and French fries.
- He loves to ride his bike!
How has the NFXF helped you or Davis?
You all have helped us stay connected with the latest updates to FX medicine and given us a community to be a part of.
What makes Jayden Xtraordinary to you?
He’s one of the most amazing little boys. With the help of his school, he has come such a long way. Even though heʼs nonverbal, you know exactly what he’s trying to say. He is so goofy and tries to be sneaky.
Special Facts:
- His favorite color and foods are red.
- His favorite animals are ducks (quack is one of the few words he says).
- Absolutely loves school.
What makes Daryl Xtraordinary to you?
He’s the sweetest little boy. He faces a lot of medical issues. He has come so far. He talks more and more every day, tries to interact with other kids, and is starting to be more independent. I couldn’t be prouder of this little guy.
Special Facts:
- He does not like animals.
- He loves to play in the water.
- He’s secretly a cat (loves to sit on baskets or boxes).
- He has a special blanket he carries around.
- Likes to hang out in his room and look at books.