Ethan Ledbetter

Ethan Ledbetter was nominated by his parent, Whitney Ledbetter

What makes Ethan Xtraordinary to you?

Ethan is our fearless, will try just about anything, caring, competitive, go-cart driving, and “I’m okay!” kiddo! He definitely keeps us on our toes and we love him just the way he is!

Special Facts:  Ethan loves to drive his go-cart, and bicycle, and loves his iPad, swimming, and just being outside! He loves to compete in track & field, bowling, powerlifting, and pickleball with Special Olympics, TN (Area 33). Ethan loves the beach, going camping, and just being outdoors. He helps take care of the animals on our farm, but his favorite farm animals are the baby goats. Ethan surprises us every day with his strength, compassion, and willingness to just try!

How has the NFXF helped you or your family?
The National Fragile X Foundation helped our family find an AMAZING Fragile X specialist, Dr. Talboy, whom we absolutely love!

—Whitney Ledbetter

Janet Rivera

Janet Rivera was nominated by her niece, Victoria Pacheco

What makes Janet Xtraordinary to you?

She is a strong mom to my cousin with FragileX, always doing what she can for him and for others! She continues to not only prioritize him but simultaneously care for her extended family. She and my uncle have supported me in so many ways and I truly appreciate all that they do for everyone

Special Facts: Loves the simple things in life, music, good food, quality time with loved ones.

How has the NFXF helped you or your family?
By being a strong foundation to rely on for facts and resources to help build my knowledge of what it really means to have Fragile X.

—Victoria Pacheco

Conner Ledbetter

Conner Ledbetter was nominated by his parent, Whitney Ledbetter

What makes Conner Xtraordinary to you?

Conner has such a caring and compassionate soul! He loves unconditionally & always wants to lend a helping hand. He is our “Ferdinand.”

Special Facts:  He loves anything Frozen, Captain America, & “his” Chloe! Conner’s favorite foods are salad with extra ranch, pizza, chips, & french rries! He loves to compete in Special Olympics, TN (Area 33), in bocce, bowling, pickleball, softball throw, mini javelin, & swimming!

How has the NFXF helped you or your family?
Yes, the NFXF helped us find an AMAZING Fragile X specialist, Dr. Talboy … who we absolutely LOVE!

—Whitney Ledbetter

Ryder Godwin

Ryder Godwin was nominated by his mom, April Godwin

What makes Ryder Xtraordinary to you?

Ryder has a helping heart. He loves helping around the house, cooking, and taking care of the family dog. He received the “helping hands” award at school for helping his friends and teachers around the classroom. He is very social with peers and loves to laugh and joke with his friends. Ryder is happiest playing Miracle League baseball, fishing, bowling, playing kickball with friends, and attending summer camp. He’s brave and kind and strong and makes me so proud every day!

Special Facts: Some of Ryder’s favorites are cheeseburgers, playing disc gold with his stepdad and stepbrother, and shooting fireworks.

How has the NFXF helped you or your family?
NFXF has given us a place to belong. We see others like us and know we are not alone. We receive articles about breakthroughs that give us hope. We have a place to read and educate ourselves on the ever-developing effects of FX and its associated disorders.

—April Godwin

Andrew Pritchard

Andrew Pritchard was nominated by his mom, Mary Pritchard

What makes Andrew Xtraordinary to you?

My son Andrew has enjoyed playing Santa for many years. He truly missed this during the pandemic. Our extended family will be gathering for the first time post-pandemic for a picnic in July. We decided to have Christmas in July so Santa Andrew will play his role for everyone once again!

This photo is of Andrew on his front porch. He has lived with support in his own home for 12 years. He is living his best life.

Special Facts:  Loves to play Santa. Ketchup is a food group. Loves college football and has about 100 hoodies to prove it!

How has the NFXF helped you or your family?
Dr. Berry-Kravis has helped us make decisions about medications many times over the years and guidance on behavioral interventions, which we share with his support staff.

—Mary Pritchard

Grayson Lazzell

Grayson Lazzell was nominated by his mom, Miranda Lazzell

What makes Grayson Xtraordinary to you?

Grayson is xtraordinary in every way! He works hard and plays even harder! He is a ball of energy with the most contagious laugh you have ever heard. We are so proud of all you have accomplished Grayson!

Special Facts: Loves chores (cooking, cleaning up). Loves swimming, finally learned to go underwater! Loves sweets, will never turn down birthday cake!

How has the NFXF helped you or your family?
Fragile X has opened our eyes to a whole different way of life! It has given us an understanding and acceptance that we did not even realize we were lacking. We are grateful for the opportunity to raise our children within the Fragile x community. The NFXF has provided an outlet for research, support, and community while navigating through our initial diagnosis.

—Miranda Lazzell

Tony Allegretto

Tony Allegretto was nominated by his mom, Anna Allegretto

What makes Tony Xtraordinary to you?

He has an amazing ability to recall facts (sometimes years later), lives by his calendar, and will always remember you.

Special Facts:  Tony loves blue, his iPad, and traveling in cars.

How has the NFXF helped you or your family?
The online information and Jayne Weber!!! Through the years NFXF materials have helped tremendously in getting things included in Tony’s IEP that educators would not have thought of as they did not know about Fragile X. Tony is older now but we now enjoy participating in the webinars about different topics that affect him (housing for example).

—Anna Allegretto

Joshua Parrot

Joshua Parrot was nominated by his mom, Kathy Pozer

What makes Joshua Xtraordinary to you?

He is super resilient and will not let his diagnosis determine what he can accomplish. Even if trying new activities is challenging for him, he will try and do his best to be good at it! Every day, he learns new things and teaches me something new too!

Special Facts: He truly cares for others, he loves all the big construction trucks and his connection with horses is awesome.

How has the NFXF helped you or your family?
We live in the present and enjoy every accomplishment, I like to call them “inch stones” (we celebrate every day).

—Kathy Pozer

Girius & Crosby

Girius & Crosby were nominated by their uncle, Rani Akkawi

What makes Girius & Crosby Xtraordinary to you?

Girius & Crosby are very loving, funny, and entertaining to be around. They are brothers who have a ton of energy and amaze me every time I see them.

Special Facts:  Girius loves to ride his scooter. Crosby loves to read books. They both love to jump on the trampoline!

How has the NFXF helped you or your family?
We have learned so much from NFXF and continue to appreciate all the knowledge you send to the community.

—Rani Akkawi

Amaya Zamora

Amaya Zamora was nominated by her mom, Erika Vasquez

What makes Amaya Xtraordinary to you?

Amaya is xtraordinary because she conquers anything she sets her mind and heart in. She knows her weakness and knows that having Fragile X makes her different but not less.

Special Facts: Amaya’s hobbies are horseback riding and art. She loves playing Roblox and has developed a deep interest in business. She even started her own slime business.

How has the NFXF helped you or your family?
NFXF has helped me understand Fragile X better. It has also given us resources for our family.

—Erika Vasquez

Jackson Heuerman

Jackson Heuerman was nominated by his mom, Megan Heuerman

What makes Jackson Xtraordinary to you?

Jackson is 1.5 years old and diagnosed with Fragile X just this year. He is making so much improvement with speech and occupational therapies. Jackson is the sweetest and silliest little boy. We think he is going to do great things and not let anything hold him back!

Special Facts:  He loves being outside, loves any and all food, and playing with his big sister who is only 18 months older.

How has the NFXF helped you or your family?
I have just recently found this in my research on Fragile X.

—Megan Heuerman

Reese Herndon

Reese Herndon was nominated by her mom, Tammy Herndon

What makes Reese Xtraordinary to you?

Reese has the biggest heart. She struggles throughout her day with anxiety but nothing will stop her from smiling when she sees a baby or animal nearby. She has challenges with her communication but give her a chance to sing Happy Birthday, and she will be the loudest singer in the room!

Special Facts: Reese loves the color blue. She has many collections of toy characters and quesadillas are always her favorite.

How has the NFXF helped you or your family?
NFXF has been an important resource for my girls and I. I am a Fragile X carrier and both my girls have a full mutation. I am incredibly grateful to have this resource to learn more and feel a connection to other families.

—Tammy Herndon

Wes Llavore

Wes Llavore was nominated by his mom, Kat Llavore

What makes Wes Xtraordinary to you?

Wes is happiness personified. His smile is infectious and he radiates love for everyone, every day. And the only thing bigger than his smile, is his heart. He approaches every day with energy and excitement and loves to share that with positivity with others. He’s the “mayor” of his school and the prince of our hearts.

Special Facts:  Wes LOVES basketball, his toy cars, and his baby brother.

How has the NFXF helped you or your family?
NFXF has helped our family identify resources in the form of specialists, new friends, and knowledge about this special community and in our journey to continuously support Wes. The foundation has helped us understand how to thrive and grow with Wes’s diagnosis as a family.

—Kat Llavore

Archer McGee

Archer McGee was nominated by his parent, Ashley McGee

What makes Archer Xtraordinary to you?

Archer has an Xtraordinary sense of humor. His laughter and smile brighten any room he enters!

Special Facts: Archer loves anything to do with the water — the beach, the pool, going out on the boat, or even just taking a bath! His special interests include cars and all things Pixar. His favorite foods are chips and pizza.

How has the NFXF helped you or your family?
Being able to connect with other families and learn directly from professionals through opportunities hosted by the NXFX has been invaluable to our family since Archer’s diagnosis two years ago. The resources available on the website have also been helpful in educating those who are part of our village including teachers, therapists, and extended family members.

—Ashley McGee

Caragan Raska

Caragan Raska was nominated by her mom, Emily Raska

What makes Caragan Xtraordinary to you?

Caragan has Fragile X syndrome with a full mutation, we found out when she was 9 months. She is now 20 years old, beautiful, and beyond amazing, she has exceeded our expectations in so many ways. She works out every day, becoming so strong and healthy, she even does job training at the local gym. She attends an Adaptive Ed program and is quite popular, during softball season, she is their student coach. She’s very social, loves to attend anything sports related, as well as, dress up and dance the night away! She’s always willing to help a friend, and be a friend!

Special Facts:  She loves Sports.

—Emily Raska

Kyle Dubeau

Kyle Dubeau was nominated by his mom, Sue Dubeau

What makes Kyle Xtraordinary to you?

Kyle shows kindness to everyone and brings a smile to all who meet him! He’s one of a kind, and the best son, brother, and uncle! His enthusiasm for racing is just one of the things we love about him. A happy disposition and always willing to help with anything are his greatest strengths. We love him so much!

Special Facts: Kyle loves to go racing with his dad and enjoys riding his bike. He loves food!

How has the NFXF helped you and your family?
The first call we made to gather information was the NFXF 23 years ago when we got the diagnosis. It gave us a starting point to know what we needed to do and got the ball rolling for services. An invaluable resource!

—Sue Dubeau

Colton Nordtvedt

Colton Nordtvedt was nominated by his mom, Tami Nordtvedt

What makes Colton Xtraordinary to you?

He is the Sunshine to everyone’s day! He is so caring and everyone knows him! They always seem to fall in love with his infectious smile!

Special Facts:  He will eat usually anything! His FAVORITE thing is playing with his farm animals and pestering his older sisters, he doesn’t have many words but always lets you know what he needs.

How has the NFXF helped you and your family?
We have learned about many FX families and it has helped us spread awareness!

—Tami Nordtvedt

Pia Muro

Pia Muro was nominated by her mom, Valentina Muro

What makes Pia Xtraordinary to you?

Pia is our third child, following her middle brother Giorgio “Jojo” who is full mutation FXS. Pia is our “Mosaic” Girl. We call her Pia Pie because she’s such a sweetie. Loving, Happy, Wild! She keeps her brothers and us on our toes!

Special Facts: Loves Baby Shark, Loves Frozen, Loves Play-dough. Her favorite animal is a fish.

How has the NFXF helped you and your family?
It’s helped to connect to families similar to ours. My son Giorgio was the first diagnosed case of FXS in our family, NFXF has helped me stay strong for Jojo and Pia.

—Valentina Muro

Mariah Frahmann

Mariah Frahmann was nominated by her mom, Brenda Frahmann

What makes Mariah Xtraordinary to you?

We own a small business and Mariah works with us. She is very social and really enjoys interacting with our customers. One day a month we go to a senior apartment complex and do a craft. Mariah is so excited to go and volunteer. She also loves to send out greeting cards for holidays and birthdays. Her list is currently 20-plus people. She goes to the store with me to pick out the cards and she signs them all herself. I am so proud that she always thinks of other people. Her favorite thing is sports! She participates in our local Special Olympics. For the past 4 years, she has been the manager for the local high school girls’ basketball team. A job she totally loves. When I think of all of the challenges she faces on a daily basis. I remember all the wonderful things that she can do and all of the lives she has touched.

Special Facts:  Mariah loves sports, especially the Bucks, Brewers, and Packers! She loves all of her pets and loves kisses from our new puppy. Mariah loves to go to the library.

—Brenda Frahmann

Philip DeAngelo

Philip DeAngelo was nominated by his mom, Ann DeAngelo

What makes Philip Xtraordinary to you?

He has amazing persistence and endearing empathy and sensitivity toward others. Philip will always remember you, even after meeting you just once.

Special Facts: He likes the color green, jumping at the trampoline park, mac ‘n cheese

How has the NFXF helped you or your family? The online information and Jayne Weber!!!

—Ann DeAngelo

Mason

Mason was nominated by his friend Courtney Grewohl

What makes Mason Xtraordinary to you?

Mason is a wonderful human. He loves to visit new places and make new friends. He has come such a long way and his community is so proud of him

Special Facts: Mason loves music and a salad with ranch is a daily favorite

How has the NFXF helped you or your family? Mason has shown me that we must include everyone in our community. Mason loves people and people love Mason.

—Courtney Grewohl

Waylon Lee Aubuchon

Waylon Lee Aubuchon was nominated by his mom, Shelby Aubuchon

What makes Waylon Xtraordinary to you?

This is my youngest son, Waylon Lee. He got diagnosed with full mutation Fragile X right before his 2nd birthday. He’s the sweetest soul! He gives the best hugs, and high-fives. Though he’s a boy with very few words. He does say things like, “mama,” “dada,” “good,” “Ellie,” and even “moo”! We are practicing our sign language. He brightens our world!

Special Facts: Waylon’s favorite animal is a cow. His favorite food is anything besides eggs! And his favorite activity is playing with his animals, and pushing his toy lawn mower.

How has the NFXF helped you or your family? It’s helped us bring diversity, and awareness to others around us.

—Shelby Aubuchon

Raz

Raz was nominated by his mom, Rachel David

What makes Raz an Xtraordinary Employee to you?

Raz is a farm worker on a horse farm. He was formally educated and received a formal certificate as a horse farm worker. He started to work 6 months ago. Raz cleans the stable, feeds the horses, and helps the horse therapists. Raz is 26 years old and this is the first job that he really likes 🙂

—Rachel David

Spencer Gammill

Spencer Gammill was nominated by his aunt, Hayley Dickson

What makes Spencer Xtraordinary to you?

Everything about our Spencer is Xtraordinary, from the way he loves his family to his precious smile. Spencer teaches us to be kind to everyone and is a fantastic cheerleader to his brother and cousins. He brings us so much joy. I am so blessed to be his aunt!

How has the NFXF helped you and your family? This organization has given our family so much knowledge about Fragile X and being a carrier. We feel like we belong to a very special community.

Are there any other special facts about Spencer? Spencer is a huge sports fan and loves watching the Dallas Cowboys with his dad. He loves trains and the color orange. He is known to have a pretty big sweet tooth.

—Hayley Dickson

Kaylin

Kaylin was nominated by her mom, Chandra Schroder

What makes Kaylin Xtraordinary to you?

Kaylin is our little ray of sunshine! She is so kind, a wonderful friend, best sense of humor and best smile! She brings us and everyone around her joy every day!

Are there any other special facts about Kyle? Pink of course is her favorite color!

—Chandra Schroder

Kyle Hamrick

Kyle Hamrick was nominated by his cousin, Tara Ebey

What makes Kyle Xtraordinary to you?

Kyle is Xtraordinary because he loves people. He has never met a stranger. Kyle also loves trash and volunteers every Monday to help do his neighborhood trash. He even has his own trash day uniform! Besides trash, he does a lot at his church and loves spending time with his family and watching Sooner football!

Are there any other special facts about Kyle? Volunteering on trash day, playing basketball in the Special Olympics, and rooting for the Oklahoma Sooners.

—Tara Ebey

Lane

Lane was nominated by his mom, Sara Knudson

What makes Lane Xtraordinary to you?

This is Lane. Lane is Xtraordinary in so many ways. His capability to light up every room he walks into is on the top of our list. He is such a hard little worker, with five diagnoses, and a full schedule of school and therapy, he still continues to keep his happy demeanor.

One of Lane’s favorite things to do is make his little sisters laugh. As soon as Lane gets home from therapy, he runs straight to the girls and does whatever he can to get them to giggle! Lane loves animals, talking about the weather, bowling, and he loooves the beach! Waves will have him “happy flapping” for hours! He is such a bright and kind little boy and we wouldn’t change him for the world!

How has the NFXF helped you and your family? We utilize NFXF for so many resources and are so grateful for all of the insight!

—Sara Knudson

Waylon Lee Aubuchon

Waylon Lee Aubuchon was nominated by his parent, Shelby Aubuchon

What makes Waylon Xtraordinary to you?

Waylon was diagnosed with Fragile x shortly before his 2nd birthday. He is in PT, OT, speech, and developmental therapy. He has come so far, and makes our lives brighter each day. He’s the sweetest boy, always so loving and caring toward others. We love our Waylon Lee.

How has the NFXF helped you and your family? They have provided so much information on Fragile x.

—Shelby Aubuchon

The Hermidas

The Hermidas were nominated by their friend, Kelly Quaye

What makes the Hermidas family Xtraordinary to you?

Fragile X brought our two families together as we each have boys the same age impacted by Fragile X syndrome. The comfort of being able to laugh and cry with this family has led to a lifelong friendship despite now living thousands of miles from one another.

How has the NFXF helped you and your family? NFXF’s online support networks helped lessen the impact of feeling so isolated and alone, which is often the case with a rare disorder diagnosis.

—Kelly Quaye

Kaiden

Kaiden was nominated by his mom, April White

What makes Kaiden Xtraordinary to you?

The most caring and loving person I know. My little earth angel. He works hard every single day to improve in something whether it’s school or something at home. Always smiling! So proud of him!!

—April White