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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Ms. Davis was nominated by one of her student's mothers, Carley Rothstein

What makes Madison Xtraordinary to you?

Ms. Davis is my son’s 2nd grade general education teacher. From the first few days of this school year, I had a special feeling about Ms. Davis. She sent home a “brag card” and listed all of the things she was proud of my son for doing. We know, as parents of kiddos with high support needs, these types of notes from school are truly special. We’re used to navigating IEP language, fighting to be heard, advocating for our children, and having difficult conversations — but we’re not always used to positive notes home.

Fast forward to the end of the school year, and these notes and positive reports home haven’t stopped. Ms. Davis goes above and beyond to modify class work, incorporates social/emotional and adaptive goals into the general ed setting, whether or not it’s an official goal, encourages empathy and patience from his neurotypical peers, promotes an inclusive learning environment as the norm, assists in encouraging and supporting friendships for my son, and shows up every day with a warmth and kindness that radiates.

She, along with his EC team and the school administration, has created a safe and inclusive environment that has drastically boosted his confidence this year. I am so grateful to her for creating such a safe, neuro-affirming, and inclusive environment, as well as her genuine interest in understanding FXS and her love for children with diverse backgrounds and abilities. Thank you, Ms. Davis. We hope you will be recognized and celebrated!

Her patience, kindness, sense of humor, and genuine interest in learning about FX all contributed to his growth this year.

Ms. Davis, amazing Mrs. Hunt, his wonderful EC team, and the supportive administrators have all worked together to promote a safe learning environment for his unique needs and they all deserve recognition. Thank you, JLE, and thank you, Ms. Davis!

Miles was nominated by his mother, Brittney Tillman

What makes Miles Xtraordinary to you?

Miles is an Xtraordinary individual because of the way he truly loves and cares for everyone. He sees the beauty in people and the world.

Special Facts

  • Miles loves popcorn, musicals, and swimming!

How has the NFXF helped you?

Miles has learned how to become a self-advocate and travel to DC for Advocacy Day with the NFXF. He’s participated in clinical trials, met wonderful clinicians, and the FX family that loves and supports him.

Erik was nominated by his mother, Christin Bender

What makes Erik Xtraordinary to you?

Erik, 14, is an amazing ray of sunshine that brings joy to everyone he meets! He is kind-hearted, loves his friends and family, and has a great sense of humor. Erik enjoys kayaking and playing at his neighborhood beach, especially when his favorite ice cream truck, TT’s Ice Cream, shows up! One thing that is unique about Erik is that he was not diagnosed with Fragile X until he was almost 12 years old. We don’t put limitations on him, and he continues to defy any obstacles in his way. Our superstar Erik is Xtraordinary!

Special Facts:

  • He LOVES the Buffalo Bills football team, especially Josh Allen
  • “Three Little Birds” by Bob Marley is his favorite song
  • Pizza is his favorite food, and he knows all of the local delivery drivers by name

How has the NFXF helped you?

Yes! NFXF has helped us connect not only with medical professionals, like the Kennedy Krieger Fragile X Clinic, but also with other FX families. Attending the conference for the first time in 2024 was an incredible experience, and I can’t wait to see everyone again this summer at the 2026 conference in Louisville.

Watch a Short of Erik
Archer was nominated by his mother, Tara Quiroga

What makes Archer Xtraordinary to you?

My son has the best laugh and will put the biggest smile on my face. The simplest things will make him so happy. He is 5 years old and does have his challenges with functional communication. But this child can read several words and recognize them in all different places. He can sing along and remember songs to his favorite shows. He loves to be around and play with his twin. And can be very thoughtful when it comes to him. He loves to snuggle and be close to those he feels safe around.

Special Facts

  • His favorite show is SpongeBob.
  • His favorite activity is drawing with chalk or dry erase markers.
  • His favorite food is ramen.

How has the NFXF helped you?

By providing updated information and resources to families.

Levi was nominated by his mother, Julie Ayers

What makes Levi Xtraordinary to you?

Levi’s high energy and infectious laugher is loved by all. He loves music and all things Taylor Swift.

Watch a Short of Levi

Varun was nominated by his parent, Naren Sankaran

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.

Jared was nominated by his mother, Brigitta Hebdon

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.

Varun was nominated by his parent, Veena Naren

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.

Ted & Matthew were nominated by their parents, the McGuinness's

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.

John was nominated by his mother, Melita Jones

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.