Xtraordinary Individuals

We asked the Fragile X community to tell us about someone Xtraordinary in their lives.

We heard from parents, professionals, friends, co-workers, grandparents, employers, cousins, doctors, and mentors, who told us about Xtraordinary teachers, spouses, children, grandchildren, parents, babysitters, employees, aunts and uncles, nieces and nephews, doctors, occupational therapists, support professionals, patients, and siblings. 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, open the nomination form here .

Dane Ortiz on a ride at a theme park.
Dane Ortiz

Dane Ortiz was nominated by his parent, Nicole Morris

What makes Dane Xtraordinary to you?

My son has limited verbal skills and speaks mostly with gestures and with expressions and some words. It took the lockdown and going to virtual school for us to finally understand him fully. He can read, he can write, and he has a lot to say. Dane is funny, sweet, and kind. He has a very strong sense of right and wrong. He never wants anyone to be unhappy or sad. He thinks everyone deserves to live their lives in a way that makes them the most happy.

Like with many of our kiddos, he has a lot of barriers that keep him from doing things. He’d love to travel but severe anxiety keeps him from getting on a plane. That being said, he loves Disneyland and goes as often as he can. Though he only stays for his favorite rides! Small world is his favorite especially the “Mexican” part because it reminds him of the Mexican half of his family. He is such a Disneyland fan (we all are) that he once gave someone advice on how to navigate the entire park including recommending rides he knows are good but won't ride! I was floored!

I can’t even begin to explain how much his being able to communicate has opened him to us and opened him to the world. He’s very smart and beats his behavior therapist at Reverse and checkers almost every time! I was a single mom most of his young life, but he is very lucky to have had strong role models in my dad and my new husband he calls “New Dad.”

Special Facts: He loves going to Disneyland! He loves cheeseburgers of all kinds. His favorite colors are blue and green.

How has the NFXF helped you or your family?
We feel more connected to others. Few seem to know about Fragile X and we have no one near us who has it or that we know has it. I often have to educate doctors about risks for me. So it’s nice to have a resource. Someone to back my claims when no one else believes me.

—Nicole Morris

Gianni Brewer in a white dress shirt and a big smile.
Gianni Brewer

Gianni Brewer was nominated by his mom, Monica Brewer

What makes Gianni Xtraordinary to you?

Gianni is 6 years old and has the biggest heart. Gianni manages to make friends wherever he goes and makes everyone smile.

Special Facts: Orange is his favorite colour, he loves music and any food that is orange.

How has the NFXF helped you or your family?
NFXF has a huge range of knowledge and wealth available to all the community and has helped us along our FX journey.

—Monica Brewer

Molly Xtraordinary Individual
Molly Gwen Lin

Molly Gwen Lin was nominated by her parent, Janet Lin

What makes Molly Xtraordinary to you?

Molly from a very young age assumed the responsibility of advocating for her older brother Jeremy who also has fragile x syndrome. She has been his champion and protector her entire life. She herself finished a masters degree in education and now is a special ed teacher in Oakland California. Each day she struggles to help her students learn and grow.

Special Facts

She loves Chinese food and baking chocolate chip cookies.2.She likes to walk at Land's End in San Francisco. 3. She likes to gather for dinner with her parents and brother, husband and his three kids. ee kids.

How has the NFXF helped you and/or your family?

Ever since I attended the first Fragile X conference, in Denver I believe, in the 1980's the foundation has provided information on diagnosis, treatment, education, and life skills.
Ford Xtraordinary Individual
Ford Macdonald

Ford Macdonald was nominated by his parent, Schuyler Macdonald

What makes Ford Xtraordinary to you?

He is a happy guy who loves his 3 big sisters

Special Facts

He lives meat, water play, and soft blankets

How has the NFXF helped you and/or your family?

It has been informational

Andy Robinson smiling big in the mountains.
Andy Robinson

Andy Robinson was nominated by his mom, Sarah Robinson

What makes Andy Xtraordinary to you?

This is Andy. He is 10 years old. We got Andy’s test results and learned of Andy’s Fragile X diagnosis at 10 days old when he was hospitalized for having a fever. We were able to start evaluations and therapies at a very early age. Andy has always been a more difficult child. His behaviors have always been more difficult to deal with than our experience with Wyatt. Andy really started thriving when he started going to preschool in our local school district. He was so loved by the staff who worked with him ... and the transportation staff has been amazing since day one.

At age 4, Andy had a severe seizure one morning. It was terrifying! He was airlifted to the closest children’s hospital where they ran tests and diagnosed him with epilepsy, something common in a small percent of Fragile X children. This was a really scary thing to have to adjust to. He had one other seizure at school a few months later but hasn’t had one since. We are so blessed that his seizure medication has always done its job. He continues to carry this diagnosis because his EEGs still show irregular activity in his brain.

Andy struggles with speech, hyperactivity, negative impulse behavior, and sensory issues that make many “normal” daily activities very difficult for him. But ... he can also be the sweetest, funniest kid. He loves to talk about his day and gets so excited when we have special trips or activities planned! Swimming! Bike rides! Camping! Lake trips! Jumping on the trampoline! The park! Hiking! Hotel stays ... with a pool!!! Swimming!!! Off-roading in our side-by-side! Swimming!!! Swimming!!! This kid LOVES to be outdoors and busy!!! And did I say he likes to swim!?!😆 Andy is very friendly ... but can be a little reserved depending on his mood.

💚 Andy LOVES TO TEASE and make people laugh. He has THE BEST laugh!! When Andy is happy ... it is the best!!! He forms relationships with people at school and on the school buses by coming up with inside jokes and funny nicknames for them. He is very well known by the whole transportation department in our school district 💚. In the last couple of years, Andy transitioned from a regular elementary school to a private school for autistic children. This has been such a blessing in his life and our family’s lives. With the help of a caring pediatrician and a school capable of meeting his needs, life has just gotten a little bit better for everyone.

Andy LOVES MUSIC 🎶🎵🎶 Besides swimming ... there is not much else that can make Andy smile more than his favorite songs. He sings and dances, and those moments are some of the happiest moments of his day!!

Andy loves his family and is the best at greeting family members when he sees them. Whether it’s one of us arriving home from work, someone coming to our home, or when we arrive at a grandparent’s or family member’s home ... he loves to greet you.

Andy has recently been diagnosed with autism as well. This wasn’t a surprise and was mostly necessary to have on his medical records. But we knew it was the case. Andy isn’t as quiet about his struggles as his brother Wyatt. He’s actually not quiet at all about when he’s not happy with a situation ... even if he doesn’t know what exactly he’s feeling, or why he’s feeling that way. Andy will let you know if he’s not OK with a situation. It is hard to watch him struggle with the feelings he doesn’t understand and trying to figure out how to express those feelings. 💚 We constantly have to keep our guard up, not knowing what will trigger him or when he will be triggered.

💚 We love Andy so much and would not trade him for anything. He has taught us soooooo much ... and continues to teach us every day. 💚

We don’t know what the future hold for our Andy-boo ... but we know he will continue to fight his inward battles and we will continue to try to help him the best we can!! 💚💚💚💚💚

Special Facts:Andy loves Sandwiches and Hot Cheetos. Loves swimming and any outdoor activities.

—Sarah Robinson

Wyatt Robinson outdoors, in a car, and with his dog.
Wyatt Robinson

Wyatt Robinson was nominated by his mom, Sarah Robinson

What makes Wyatt Xtraordinary to you?

Wyatt is 15 years old. He was diagnosed with Fragile X syndrome at the age of 7 months old. We had his blood tested at birth. We were told the DNA test for Fragile X came back negative. But ... at the age of 5 months, we noticed he was not reaching some simple milestones for his age. We spoke to our pediatrician and found out the wrong test was ordered at birth. We had the correct DNA test run and got the results that we had anticipated ... positive for Fragile X syndrome. We began taking the necessary steps to make sure Wyatt had the evaluations and therapies he needed to thrive as much as possible. He has overcome so much and surpassed our expectations every day.

💚 Wyatt has always been the happiest boy!! He is the friendliest, sweetest, most caring person you’ll ever meet. He loves everyone and EVERYONE loves him. He has a deep love for babies and animals. Small children and animals love him as well. Wyatt is helpful and loves to be put to a task. Wyatt’s smile lights up the room!! He loves to laugh and when he laughs ... it is contagious! If you want to really enjoy a good comedy show or movie ... have Wyatt watch it with you 🤣. He makes it sooooooo much better 😂. Wyatt enjoys watching movies and having the independence of changing out his favorite DVDs as many times as he wants 😆. He also loves music and he actually 🎵 sings 🎵 REALLY well. 🎶

💚 Wyatt struggles with speech, hyperactivity, sensory issues, pretty severe shyness in front of crowds, and severe anxiety in many situations. Wyatt is a WARRIOR!!! He is constantly putting on a brave face for the world 💚. He often hides how afraid he is every day of his life. He is a super great brother to his siblings. He is so very patient with his little brother and he loves to make Andy laugh when he’s upset. He’s a wonderful son as well! He is always telling us he loves us and is always there with a great hug 🤗 🥰. Wyatt will probably never live a “normal” life for his age. But he lives a happy life nonetheless. His dream job is to work at Home Depot someday. Maybe he will ... only time will tell. If you’ve had the pleasure to have Wyatt as a part of your world ... you are so lucky!!!! 💚💚💚💚💚

—Sarah Robinson

Lorelei McGee wearing a green sparkly dance costume.
Lorelei McGee

Lorelei McGee was nominated by her parent, Ashley McGee

What makes Lorelei Xtraordinary to you?

Lorelei has such a kind, empathetic heart. Her self-awareness and ability to communicate her emotions is amazing!

Special Facts: Lorelei loves dance! She’s been taking classes since she was 4 years old, and this year will be joining one of her studio’s competition teams.

How has the NFXF helped you or your family?
NXFX has provided invaluable resources to help me better understand how Fragile X Syndrome presents differently in Lorelei than it does in her younger brother.

—Ashley McGee

Azura Campbell with her arm around her brother Rowan's shoulders.
Rowan and Azura Campbell

Rowan & Azura were nominated by their parent, Kerry Conaghan

What makes Rowan & Azura Xtraordinary to you?

I am so proud of my Xtraordinary kids! Both have full mutation, and are doing amazing things according to their abilities. Az is in their second year at community college studying automotive technology. Rowan is beginning the transition to adult services right now and especially loves delivering Meals on Wheels.

Special Facts: These amazing kids have hiked more than half of New Hampshire’s 4,000 footers. They have backpacked to the bottom of the Grand Canyon twice, and have an awesome spirit of adventure. They both love our Honda Element (which Az can drive!).

How has the NFXF helped you or your family?
NFXF has been an amazing source of information and support. It’s the first place I go to when I have any questions about best practices and current research opportunities. We have been proud to attend Advocacy Day a couple of times as well, which is so important for shining a light on this issue and securing research funding.

—Kerry Conaghan

Mack Feldman at the library.
Mack Feldman

Mack Feldman was nominated by his friend, Avi Arana

What makes Mack Xtraordinary to you?

My Friend Mack
Mack has no mean bone in his body
never tries to hurt kids,
is just nice to them
no place for hate looks like
going to Shake Shack
with Mack
chicken nuggets, french fries,
a Coke or an unsweet tea
he laughs at something that is not that funny
and I also laugh.

Special Facts: Mack loves Saints football, the color orange, and Paris.

—Avi Arana

Denisse in a bright red and white dress sitting on on a chair on the porch.

Denisse was nominated by her mom, Dianna Parra

What makes Denisse Xtraordinary to you?

She has overcome many obstacles like head surgery and yet continues to improve so much in so many ways.

Special Facts: Loves Dora the Explorer.

—Dianna Parra

Jennifer (mom), Joseph (dad), Joshua, Joanna (standing), and Juniper Lofino, together outdoors.
Joshua, Joanna, and Juniper Lofino

Joshua, Joanna, and Juniper Lofino were nominated by their parents, Jennifer and Joseph Lofino

What makes Joshua, Joanna, and Juniper Xtraordinary to you?

Joshua (6), Joanna (5), and Juniper Lofino (18 months) are the sweetest and happiest kids you’ll ever meet. They have their individual struggles, but we are so proud of how they each handle them. As parents, we have learned so much through this experience and we are better people because of our three little blessings. They are strong, smart, and determined kids. Couldn’t be any more proud of them.

Special Facts: Joshua is amazing at drums, loves the color orange, and chicken and broccoli are his favorite foods. Joanna loves to pretend play, the color pink, and macaroni and cheese is her favorite food. Juniper’s favorite color is anything that sparkles, her favorite food is pizza, and she loves to play outside.

How has the NFXF helped you or your family?
They have been a well of information and so supportive in our journey!

—Jennifer and Joseph Lofino

Miles Tillman wearing a "not broken" baseball cap and drinking a milkshake.
Miles Tillman

Miles Tillman was nominated by his mom, Brittney Tillman

What makes Miles Xtraordinary to you?

Miles has the biggest heart, the best sense of humor, and enjoys the world in a beautiful way.

Special Facts: Miles loves to swim, eat popcorn, and give speeches!

How has the NFXF helped you or your family?
From picnics to conferences, doctors’ appointments to advocacy days, the NFXF has been by our side from the day we learned about our diagnosis. We are so grateful for all of the support on our journey.

—Brittney Tillman

Jackson Heuerman wearing a yellow tanktop that says "Vroom."

Jackson was nominated by his mom, Megan Heuerman

What makes Jackson Xtraordinary to you?

Jackson was diagnosed just this year at only 1.5 years old. He is doing amazing and working so hard at overcoming the obstacles he has faced so far. He is the happiest and wild little man!

Special Facts: Jackson loves food, his mommy, and playing outside!

How has the NFXF helped you or your family?
I found the NFXF recently and have been learning so much from following on social media and reading from the website.

—Megan Heuerman

Yaron Berkowitz picking his own strawberries.
Yaron Berkowitz

Yaron Berkowitz was nominated by his mom, Ilana Garber

What makes Yaron Xtraordinary to you?

Yaron is smart, brave, and happy. He works so hard on reading and writing. He loves math. His favorite thing is to sing. He could sing all day! His taste is very eclectic — he likes show tunes, pop, and Jewish prayer music. He is incredibly spiritual. He is engaged in politics and loves to follow the news and weather — always asking us questions. He gives the best hugs and squeezes. He is our true joy!

Special Facts: Favorite food — anything that crunches, like pretzels, chips, crackers.

—Ilana Garber

David Fishman outdoors drinking a soda.
David Fishman

David Fishman was nominated by his friend, Jennifer Frobish

What makes David Xtraordinary to you?

David is a goal-getter! He worked with Easter Seals in STL for career coaching for several years because he wanted a job. He had significant anxiety to overcome, but his focus and determination helped him develop coping skills. He was able to obtain an internship at Straub’s, a local grocery store, and eventually a paid position! He takes great pride in his work. David is so kind and helpful, and customers love him! He doesn’t forget anything so if you need help finding things, he knows exactly where to send you. He is an incredible man and friend!

Special Facts: David is an artist! His work with Artists First has been on display at The Sheldon in STL. He also enjoys bowling and acting.

—Jennifer Frobish

Brothers Aton and Aidan McLaughlin together and laughing.
Aton & Aidan McLaughlin

Aton & Aidan were nominated by their mom, Maria Quaranta

What makes Aton & Aidan Xtraordinary to you?

Aton (left) is the happiest human you’ll ever meet. He lights up the room and his happiness and smile are extremely contagious. He makes life so much more enjoyable. Aidan (right) is the kindest most loving caring little dude. He’s always willing to help and care for others. He’s the biggest lover and cuddler.

Special Facts:
Aton loves music—Adele is his favorite voice to listen to. He loves playing with his guitar and StoryBots. And having wind blown in his curls.

Aidan’s favorite food is everything bagel Daddy makes him. He loves big pickup trucks and playing with his John Deere tractor.

They both love to go on walks and car rides with the windows down.

How has the NFXF helped you and your family?
We’ve been able to find the services that best fit the boys and our family. We have more answers and a sense of direction to help us navigate through this new chapter in our lives.

—Maria Quaranta

Beau Wright Xtraordinary Individual

Willie was nominated by his teacher, Amy Cornett-Phillips

What makes Willie Xtraordinary to you?

Willie's contagious positive attitude brings joy daily to everyone he encounters. His sincere expression of happiness about life in general sets the tone for a successful school day.

Special Facts

Willie loves all sports. He is a member of the Cross Country and Track teams at school. Willie is also a member of the chorus.

How has the NFXF helped you and/or your family?

NFXF has provided essential training information in order for me to become a better teacher for Willie.
Beau Wright Xtraordinary Individual

Nathan was nominated by his cousin, Nicole Smith

What makes Nathan Xtraordinary to you?

Nathan is 15 years old and lives with Full-Mutation Fragile X and Autism. He is caring, smart, and the life of the party! Nathan can remember names after the first time he meets someone. His cousin, Nicole is 28 years old and is also a full-mutation carrier of fragile x, but without the cognitive and behavioral challenges generally associated with full-mutation carriers. Nathan has changed Nicole’s life and the way she sees the special needs community. She advocates for her cousin Nathan and hopes to be apart of creating a more inclusive environment for Nathan as he continues to prepare for adulthood!

Special Facts

Nathan has loved buzz-Lightyear since he was at least 5 years old, he loves to go for rides in his Dad’s hot rod cars, and loves to have people over at his house.

How has the NFXF helped you and/or your family?

By providing opportunities for other families affected by fragile x to meet at conferences and advocacy days. The NFXF also provides so many resources that we are able to share with others that might not otherwise have heard of fragile x!
Jordan Hambleton playing baseball.
Jordan Hambleton

Jordan Hambleton was nominated by his mom, Jessica Hambleton

What makes Jordan Xtraordinary to you?

Jordan is xtraordinary to me and everyone in his family. He makes you laugh, smile all the time, and he loves to give hugs. He can turn a bad day into a good one just by a simple I love you to saying HI 👋, or saying Have a good day 😊, he is genuine in his own way and makes new friends no matter where we go. Jordan has the full mutation 200+++, he has 3 kidneys, 2 extra valves, Kawasaki disease, damaged heart, IgA deficiency, torticollis, and 2 spleens, but none of this stops him ... always had a smile and is a happy boy now that he is 12 years old and still the same upbeat kid. Ask anyone who knows him, they love him like their own so he is Xtraordinary to all of us.

Special Facts: He likes orange and blue, and he loves animals, especially horses.

How has the NFXF helped you or your family?
It has given me the information I needed to hear to help with questions I had, and gives me ideas.

—Jessica Hambleton

Beau Wright Xtraordinary Individual

Heather was nominated by her sister, Tracy Thompson.

What makes Heather Xtraordinary to you?

We are both mothers for two adults with FXS. Heather is an inspiration to me. She has the gift of compassionate, no nonsense love for all.

Special Facts

In moments, Heather has the ability to put at ease a room full of children. She loves to be organized. She received the Compassionate People Award 2022-2023 from the Schenectady, NY school district.

How has the NFXF helped you and/or your family?

NFXF has been a lifeline form our family, especially as we transition to adulthood. Whenever we have needed support, we have receive prompt and personal responses.
Beau Wright Xtraordinary Individual

Beau was nominated by his parent, Susan Wright

What makes Joe Xtraordinary to you?

Beau is a bright ray of sunshine and fills our lives with joy! He has overcome so many obstacles and continues to amaze us with his accomplishments. He loves school and going to the gym where he continues to surpass the goals set for him. He is funny and sweet and teaches us all so much about living in the moment and unconditional love.

Special Facts

Beau is an excellent swimmer. His favorite food is cheese. He just started singing!

How has the NFXF helped you and/or your family?

Educated us, offered ideas, let us know we’re not alone
Alaina in a dance costume.

Joe was nominated by his parent, Valerie Hansen

What makes Joe Xtraordinary to you?

Joe is kind, funny, and sweet AND he is the best big brother to Gus. Gus has FXS and Joe helps him everyday. He’s learned how to use his AAC device, plays nerf guns with him, and tells Alexa to play Gus’s favorite music.

Special Facts

Joe loves the color red, Minecraft, and macaroni.

How has the NFXF helped you and/or your family?

It’s been a great way to connect with others and have access to research and information.
Alaina in a dance costume.

Alaina was nominated by her parent, Alexis Girardo

What makes Alaina Xtraordinary to you?

Alaina is sweet, kind, loving, and always has a smile on her face! She loves music, princesses, swimming, makeup, and especially dance! She did an amazing job in her first dance recital!

Special Facts

Her favorite color is pink, her favorite food is soup and her favorite activity is dancing!

How has the NFXF helped you and/or your family?

Helped us to find resources and information to understand and navigate Alaina’s Fragile X Diagnosis.

Mason Barnard reading a book while sitting on a couch at home.

Kristen was nominated by her parent, Donna Russo

What makes Kristen Xtraordinary to you?

She is the kindest most beautiful girl I know. She truly is one of our biggest blessings in life.

Special Facts

Her favorite color is blue, she loves to bake and she lives spaghetti with meat sauce

How has the NFXF helped you and/or your family?

The resources it provides

Mason Barnard reading a book while sitting on a couch at home.

Adyah was nominated by her parent, Jelisha Jeffers

What makes Adyah Xtraordinary to you?

Adyah is a sweet sassy beautiful fun boss baby. Even though she’s nonverbal when she comes in a room she is definitely heard and understood!

Special Facts

Adyah loves to be outside and to be free. She loves to be outside and her favorite movie is BossBaby!

How has the NFXF helped you and/or your family?

OMG the information that they provide is so knowledgeable and awesome. Im so glad that I get updates and able to learn and get so many updates
Mason Barnard reading a book while sitting on a couch at home.

Edward was nominated by his parent, Doreen Powers

What makes Edward Xtraordinary to you?

Great guy, so happy and friendly to all. Loves to travel and if need help he is right there

Special Facts

Loves Mr Rogers and The price is right

How has the NFXF helped you and/or your family?

Knowing more about it
Mason Barnard reading a book while sitting on a couch at home.

Grace was nominated by her parent, Heather Vinduska

What makes Grace Xtraordinary to you?

Grace signed up on her own about 10 before midnight of the cutt-off date for a local pageant (Miss Unstoppable) for girls age 5 and up with intellectual and developmental disabilities. She chose to do a talent which was optional for this event. When I asked if we needed to start working on her talent which was a dance, she said "I already did it". When all was said and done, she won the pageant! Trophy was 4 feet tall! She also won 2 of the 4 smaller trophies, one for "Talent" and the other for "People's Choice". She is Miss Unstoppable 2023! She is spending this year representing the local disability organization, Ability Point, as well as being an advocate for people with disabilities in her community. She has met the mayor and local news celebrities, been in 2 parades (one being the Miss Kansas parade), dropped the hockey puck at the hockey games, flipped on Christmas lights, in addition to various local appearances and fund raisers, to speak on behalf of people with disabilities. She rocks and she is beautiful inside and out!

Special Facts

Grace's favorite color is pink.
Mason Barnard reading a book while sitting on a couch at home.

Harrison was nominated by his parent, Ashley Livingstone

What makes Harrison Xtraordinary to you?

This is Harrison he is 4 years old and he’s making such strides . We have been crushing goals . The amazing things I’ve seen the last couple years are mind blowing . I’m so incredibly proud of him . His words his swimming his independence . He’s amazing his giggles his smiles. We are so blessed.

Special Facts

Blue chips popsicles

How has the NFXF helped you and/or your family?

He’s helped us in so many ways taught all new things .
Mason Barnard reading a book while sitting on a couch at home.

Paul was nominated by his parent, Carole E. McCammon

What makes Paul Xtraordinary to you?

Paul is one of the kindest, loving and funny person to be around. He cares deeply about everyone. He loves being successful and independent. He knows a million songs and enjoys singing them. He also has achieved so much in his life. For the last seven years he has lived independently in his own apartment with assistance when needed. He works as a volunteer two days a week at Interfaith Food Ministry, and also works two days at Neighborhood Center for the Arts. He is able to get himself up and ready for work and can schedule his own bus rides to and from work. He is learning skills to be able to get a job in the near future.

Special Facts

His favorite food is burritos and tacos. His favorite color is black. He loves playing baseball, bowling, going to Camp and riding a bike. He absolutely loves the Giants baseball team and watches all of their games. We usually go to Spring Training in Scottsdale which is his favorite thing to do. He loves sports

How has the NFXF helped you and/or your family?

I was part of the first parents Fragile X support group team in Northern California. We worked with the medical staff at Children's Hospital in Oakland, Ca, where parents could get help and support with diagnosing and treatment for their children with Fragile X.
Mason Barnard reading a book while sitting on a couch at home.

Mason was nominated by his parent, Julie Barnard

What makes Mason Xtraordinary to you?

Mason is a joy and lights up the world with his smile and loves people.

Special Facts:  He loves books, coloring, and riding his scooter.

How has the NFXF helped you or your family?
Helped us understand this disorder so we know how to better help him.

— Julie Barnard

Blake Erdmann with his dog, and at the beach showing off his muscles.
Blake Erdmann

Blake Erdmann was nominated by his aunt and his dad. The first one is from his Aunt Carol and the second his dad, Jim Erdmann.

What makes Blake Xtraordinary to you?

Blake is 7 years old and has the biggest heart. He is silly, sassy, and the coolest little dude.

Special Facts:  Blake loves tacos, playing on his iPad, swimming, and hanging out with his best friend, Grandpa, who he affectionately calls “Pa.”

How has the NFXF helped you and your family?
NFXF has provided resources and info to help Blake live his best life.

—Carol Reilly

What makes Blake Xtraordinary to you?

Blake has made tremendous progress with his overall development since being diagnosed with Fragile X while in utero. His continued improvement of his speech, fine motor skills, and communication skills are beyond Xtraordinary. We are extremely thankful for all the hard work his teachers, aides, therapists, and doctors have put in!

Special Facts: Blake loves emergency vehicles, garbage trucks, buses, and trains. His favorite foods are chicken sandwiches and pizza. He loves to spend time in the pool, at the beach, or at the firehouse, where his daddy volunteers as a fireman.

—Jim Erdmann

Ayden Shalow wearing dress pants, shirt, and tie.
Ayden Shelow

Ayden Shelow was nominated by his mom, Alysha Arbogast

What makes Ayden Xtraordinary to you?

Ayden is my smart, funny, caring, and lovable soon-to-be 14-year-old son. He was born on July 25. He has taught me patience and a love for the little things in life, that most take for granted.

Special Facts: Ayden’s favorite color is blue. He loves playing wrestling on his PlayStation and swimming. He doesn’t have a favorite food, he loves all food.

How has the NFXF helped you and your family?
It has helped further educate myself and those close to us.

—Alysha Arbogast