Xtraordinary Individuals

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We asked the Fragile X community to tell us about someone Xtraordinary in their lives. We are thrilled and delighted they shared with us so we can share with you, and help raise awareness about Fragile X and the lives it touches.

To nominate your Xtraordinary Individual, find our nomination form here .

Jace Wheatley

Jace Wheatley

Jace was nominated by his mom ➞

What makes Jace Xtraordinary to me is that he is completely nonverbal but has no problem letting us know what he needs/wants!

—Lauren Cauley

Courtney Laubach at an outdoor cafe, wearing lots of necklaces and bracelets, and smiling

Courtney Laubach

Courtney was nominated by her mom ➞

Courtney has one of the kindest souls, unlimited compassion, and always eager to help others when she can.

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Dalia and Jonathan hugging in a shopping mall

Dalia and Jonathan

Dalia and Jonathan were nominated by their mom ➞

They are Xtraordinary because with their beautiful smile they make shine not only the most difficult of my days, but also the ones that surround them.

—Violeta G. Sánchez

Nick Hertzig in an appearance on TV in Washington, DC, during Advocacy Days

Nick Hertzig

Nick, shown on TV during Advocacy Days, was nominated by his cousin ➞

Nick makes everyone else’s life #Xtraordinary. Throughout his life, he has smiled. He is the best small-talker I know; I use him as the example for my own Aspie son on how to interact with others. He is an #Xtraordinary advocate for himself and others; the attached photo is from his appearance on TV in Washington, DC, during Advocacy Days. He is a great role model for his brother, Jake, who also has Fragile X, and inspiration for his parents, sister, and cousins, especially me.

—Bill Donnelly

Anna Everhart holding her "Student of the Month" certificate

Anna Everhart

Anna was nominated by her mom ➞

Anna is truly a bright and special soul. She is smart, sassy, and loving. Her amazing tenacity through all of her struggles makes her my ultimate hero. She never gives up, even when frustrated and is constantly reminding me l that, “I’ve got it Mommy.”

—Chereasa Hunter

Anna Galvan with her son CJ Galvan

Anna & CJ Galvan

Anna and her son CJ were nominated by Anna’s brother (CJ’s uncle) ➞

If you know of a pair of people who do life better than most, then you probably know my nephew CJ and his mom Anna, my sister. They both embrace each new day as just that, a NEW DAY!

Smiling and living it to the fullest. Spending time together, swimming, reading, or just doing chores. Some days are more challenging than most but, you’d never know it by the smiles they keep on their faces! They are two peas in a pod. This summer, they’ve done science projects indoors and outdoors, gone to the beach, and just laid in bed watching movies! Now these things may not seem #Xtraordinary but they really are! They are because of their immense love for life and each other!

—Patrick Galvan

Crosby John Akkawi running around laughing outdoors

Crosby John Akkawi

Crosby was nominated by his mom ➞

He is literally the definition of happy! I call him the future mayor of our town because he waives and says hi/bye to anyone and everyone he crosses paths with. He is strong, fast, and adorable! He’s exceeded goals and continues to impress me!

—Keri Akkawi

Girius Owen Akkawi outdoors playing in the grass and dirt

Girius Owen Akkawi

Girius was nominated by his mom ➞

Girius aka “G” is a kind soul who aims to please people. He loves helping and to be included! He’s creative and has the best sense of humor. He’s #Xtraordinary because he has overcome severe self injurious behaviors and is now a role model to his younger brother, Crosby Akkawi.

—Keri Akkawi

Paige & Mae Otterson in the kiddie pool with their Fragile X superhero brother

Paige & Mae Otterson

Paige & Mae were nominated by their mom ➞

These two girls love their brother and know he’s capable of great things. They will tell you all about how their Fragile X brother is a superhero!

—Stefanie Otterson

Laura Dooling and her friends and cousins smiling for the camera

Laura Dooling

Laura was nominated by her uncle ➞

“Cousin Laura” is the coolest relative of the FX guys in our big, loving, family!! She takes them on trips, challenges them to explore, teases with them, teaches them, introduces them to her friends and loves them unconditionally. And all because that’s just who she is — a bright, fun, and caring woman. She makes all our lives better and brighter.

—Jay Souder

Logan on a lawn

Logan

Logan was nominated by his mom ➞

This is Logan 😍. We just celebrated his 14th bday on July 1. If schools ever open up again, he will be in 9th grade and going to high school this coming year. He is 6′ 3″ already. Such a kind, BIG-HEARTED child. He is such an important member of our home! Always worried if his sister and I are OK or if we are in need of “cuddles.” A suppppper people reader. He ALWAYS knows when someone is upset or sad and offers kind words such as “Don’t worry, it will be ok … I promise.”

—Logan’s mom

Lorenzo wearing sunglasses

Lorenzo

Lorenzo was nominated by his mom ➞

That’s my beautiful son Lorenzo. We are from Belgium, he is 13 years old. Always happy and friendly, he even likes to do photo shoots.

—Natasja (Lorenzo’s mom)

Rixon helping out his dad with a power drill

Rixon

Rixon was nominated by his dad ➞

This is my youngest son, Rixon. He has Fragile X syndrome and is diagnosed with autism. One thing I have learned is that he wants to be involved in whatever we are doing. When we involve him, he thrives.

—Chris Costa

Dan Woodard

Dan Woodard

Dan was nominated by his mom ➞

He is worth it! Every meeting, every appointment, every therapy session, every insurance battle, every school battle, every service battle… His life has value and he has a lot to say, if you listen with your heart.

—Carol Woodard

Matthew with his step father Brent Schaumburg

Brent Schaumburg

Brent was nominated by his wife ➞

Brent and I were set up on a blind date by my sister and brother-in-law in 2006. We had a great time. …

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