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 .
Jayden Starr
Jayden Starr was nominated by his parent, Amy Starr
What makes Jayden Xtraordinary to you?
Jayden loves everyone! He is so friendly, happy, and loving. He likes to swim, especially cannon balls! He loves Mario Kart, rigatoni, basketball, and his favorite blanket (moose).
Special Facts: His favorite color is blue. His favorite food is rigatoni, his favorite activity is watching YouTube.
How has the NFXF helped you or your family?
I’ve learned so much and found that, while we are all the same, we are all so different.
—Amy Starr
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
Benji Rodriguez
Benji Rodriguez was nominated by his parent, Cecilia Torres
What makes Benji Xtraordinary to you?
Benji is definitely Xtraordinary! He’s one of the most happy kids! He always has a big smile on his face, despite his disabilities, he definitely doesn’t let that stop him from what the world brings to him!
Special Facts: He loves the water, loves taking walks, and his favorite color is pink.
How has the NFXF helped you or your family?
NFXF has been a complete help with lots of information and resources! Glad to be subscribed to them!
—Cecilia Torres
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
Mikenna Frost
Mikenna Frost was nominated by her parent, Rebekah Frost
What makes Mikenna Xtraordinary to you?
Mikenna is kind, caring, and sweet. She excels with her love for her animals and her horses. She has risen above her disabilities and we are so proud of her. She is full mutation and we never knew it as we were focused on her younger brother. She has had her struggles but she has always risen above all her obstacles!
Special Facts: Her favorite thing is horseback riding!
—Rebekah Frost
Waylon Maples
Waylon Maples was nominated by his parent, Shandi Maples
What makes Waylon Xtraordinary to you?
Waylon is Xtraordinary in so many ways. His smile lights up a room and his laugh is the best sound in the world. His spunk and fearless nature keep us all on our toes daily but we wouldn’t change him for the world! He’s just the sweetest boy and loves to give snuggles and hugs to everyone. We all just adore him!
Special Facts: Waylon is a foodie! He will try everything at least once. His favorite foods are a close tie between spaghetti and pizza. He’s got a big heart for the outdoors. He loves anything to do with water whether it’s swimming or simply splashing around with a water hose. He loves his doggie and any other animal he comes into contact with.
How has the NFXF helped you and/or your family?
We have learned so much about our boy thanks to the NFXF! We have also been introduced to Dr. Talboy and look forward to meeting her in person and introducing her to our sweet boy.
—Shandi Maples
Isaiah Roque
Isaiah Roque was nominated by his grandmother, Sandra Maggard
What makes Isaiah Xtraordinary to you?
Isaiah is so full of life and has taught me and the rest of his family how to embrace our uniqueness as humans. He keeps learning new things each day and he doesn’t let Fragile X slow him down. He’s always eager to be a part of any new trial study that can help others like him who have Fragile X. He recently broke his leg and has been confined to a wheelchair for the last 3 weeks but he hasn’t let that stop him. He’s learned how to navigate a wheelchair like a champ and still has managed to keep his positive outlook on life.
Special Facts: His favorite activity is going to monster truck shows. His favorite truck is Grave Digger. He also enjoys riding on the side-by-side through our local mountains. He loves nature. His favorite person is his papaw Tim. They are best buddies and Isaiah loves spending time with him and doing fun activities with his papaw.
How has the NFXF helped you and/or your family?
We have learned so much about Fragile X and have been able to learn about the many medical advances that have been made over the years and the many advances that are in the works now and soon to come as well.
—Sandra Maggard
José
José was nominated by his sister, Diana Javier Parra Casarez
What makes José Xtraordinary to you?
He is very smart and has a good memory. Always willing to help out in any way. And always wants to learn new things. Most of the time he ends up helping me instead of me helping him. I always tell him he’s the best brother ever.
Special Facts: Likes sports, likes music, and eating out.
How has the NFXF helped you and/or your family?
It has helped me by getting information to give to friends and family.
—Diana Javier Parra Casarez
Denisse Parra Casarez
Denisse Parra Casarez was nominated by her parent, Diana Javier Parra Casarez
What makes Denisse Xtraordinary to you?
She has overcome many obstacles including head surgery and has managed to succeed in many ways. She always works hard to achieve her goals.
Special Facts: She is a girly girl who likes to dress up. Loves Dora the Explorer and loves going to the beach.
How has the NFXF helped you and/or your family?
It has helped me in getting information to pass along to my friends and family.
—Diana Javier Parra Casarez
Javier Parra Casarez
Javier Parra Casarez was nominated by his parent, Diana Javier Parra Casarez
What makes Javier Xtraordinary to you?
He is a smart happy boy. He always works hard to achieve his goal. Loves to be in water. Loves pools.
Special Facts: Smart, good memory, and always in a good mood.
How has the NFXF helped you and/or your family?
It has helped me by getting more information about frágile X that I can share with family and friends.
—Diana Javier Parra Casarez
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
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
Denisse
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
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
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
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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: Mack loves Saints football, the color orange, and Paris.
—Sarah Robinson
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
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
Jackson
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
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
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
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
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
Beau Wright
Beau Wright was nominated by his mom, Susan Wright
What makes Beau Xtraordinary to you?
Beau has overcome so many obstacles, but works so hard at school and at the gym and continues to amaze us all with his accomplishments. He makes friends everywhere he goes and teaches us all about unconditional love, forgiveness, and finding joy in the little things.
Special Facts: Beau is an excellent swimmer. His favorite food is cheese. He just started singing!
How has the NFXF helped you and your family?
Educated us, offered ideas, let us know we’re not alone.
—Susan Wright
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
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
Alaina Girardo
Alaina Girardo was nominated by her mom, 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 your family?
Helped us to find resources and information to understand and navigate Alaina’s Fragile X diagnosis.
—Alexis Girardo