Xtraordinary Individuals

Please visit page 1 to learn more or to nominate your xtraordinary individual.

Dixie outdoors on a snowy day wearing a coat and hat.

Dixie was nominated by her dad, Oliver Hugaas

What makes Dixie Xtraordinary to you?

Dixie has worked so hard to overcome her disability despite all the hardship she has faced, from staying up late with me to put in the extra effort to learn how to read and write, learning the numbers, and how to use them!

Dixie is a good worker who daily does her very best to live up to her responsibilities both at home and at work. Dixie also knows to turn the other cheek when people are meanspirited or rude toward her because of her disability since she knows that “just because other people are mean it does not mean that I have to be.” Even if she disagrees she never argues or backtalks, she always meets others with a smile and loves cats. She might be goofy but I love her so much, being her father is the best thing that happened to me. She is Xtraordinary!

—Oliver Hugaas

Riley at his local coffee shop for his weekly treat a Carmella coffee.

Riley was nominated by his mom, Debi Cheek

What makes Riley Xtraordinary to you?

Riley is an amazing young man and anyone and everyone that meets or knows him loves him! Riley has been working for the past nine years for the Durham Bulls baseball team. They are affiliated with Tampa Bay and this past season they won the national championship! Ri guy along with his dad and uncle Matt were able to go to the playoffs in Vegas! They won and it was a trip of a lifetime.

This season Riley will be on the ground crew and looks forward to this new chapter!

Riley also works for a local coffee shop as well. He’s made many friends there and loves his boss and owner, Dave. You see they both share a LOVE for baseball. On Sundays and I mean every Sunday you can find Riley at his local coffee shop at approximately 6:30 am for his weekly treat of a Carmella coffee. He then volunteers at his church and works on the production team. He serves every week! Riley is so devoted to all that he does and works hard. He loves his church, family, and friends. What could you not love about this wonderful man! Love you Ri guy!!❤️

—Debi Cheek

Evemarie selling Girl Scout Cookies

Evemarie was nominated by her mom, Jessica Betanco

What makes Evemarie Xtraordinary to you?

Evemarie is a happy girl! She loves to sell Girl Scout Cookies door to door and meet new people ♥️ At school she always tries her best and works really hard to get her assignments completed. She also takes tennis lessons.

—Jessica Betanco

Benjamin Smith
Benjamin Smith

Benjamin Smith was nominated by his mom, Breea Smith

What makes Benjamin Xtraordinary to you?

Benjamin lives with Fragile X Syndrome but he sure doesn’t let that hold him back. He is the happiest little 7-year-old you have ever met! His smiles and laughs light up the room. He has a fun and energetic energy that is contagious. He is sweet and caring too. He adores his little sister Lydia and looks up to his big brother Jacob (also w FMFX). Ben enjoys playing with friends, baseball, swimming, and loves to ride his bike. We love you Ben!!

—Breea Smith

Jacob Smith
Jacob Smith

Jacob Smith was nominated by his mom, Breea Smith

What makes Jacob Xtraordinary to you?

Jacob is living with Fragile X Syndrome. Jacob is the sweetest 10-year-old boy you have ever met. He is very kind and excels at helping those around him however he can. He always notices what needs to be done. He has a great memory and a good sense of humor, although sometimes is very literal, lol. He is a great big brother to his brother Ben (also w FMFX) and to his sweet little sister Lydia. Jacob is a kind-hearted boy. He enjoys playing baseball with his friends, riding his bike, and swimming. He enjoys learning and always meets the day with his “happy flap!” We love you Jacob!!

—Breea Smith

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Philip DeAngelo

Philip DeAngelo was nominated by his mom Ann Marie DeAngelo (and father)

What makes Philip Xtraordinary to you?

My son, Philip, amazes us with his bravery. We know he lives with incredible anxiety each day of his life. However, he shows such persistence and courage when he wants to accomplish something. Philip, you are extraordinary to us.

—Mom & Dad

Madison Sexton
Madison Sexton

Madison Sexton was nominated by her grandmother, Marcia Sexton

What makes Madison Xtraordinary to you?

Madison’s brother who is 9 months older has FX. For the past 15 years, she has played big sister to him in all ways. She helps him get ready for school, keeps him on task with his chores, puts up with his constant repetition, and is a great teacher. She is Xtraordinary in her unselfish giving and her amazing love for her brother. She obviously becomes irritated at times with his behaviors, but her anger is quick to dissolve and her “love you Finny” is straight from her heart. She is an amazing young woman.

—Marcia Sexton

Noam swimming, working on the farm, and caring for animals.

Noam was nominated by his dad, Moez Cherif

What makes Noam Xtraordinary to you?

Noam brings a lot of joy and life to our family, and we are gifted for having him. He’s wired differently and he’s smart in his own way. He loves swimming, hiking, slacklining, and caring for animals at home, or on a farm he goes to on Fridays as part of his learning. He’s a special kid, and he continues to teach us how to stay grounded in values that matter and be better humans every day.

I’ll do everything for my child and I’ll do my best to honor him and the thousands of kids with Fragile X through this fundraising and future actions. Noam gives me and his mom and brother an incredible strength, and we will be forever proud of him and how he is growing as an adult young man.

I’m grateful to the National Fragile X Foundation for supporting my fundraising project and giving me the opportunity to raise more awareness about Fragile X syndrome.

—Moez Cherif

Preston Levenzon at home.
Preston Levenzon

Preston was nominated by his mom, Katrina Levenzon

What makes Preston Xtraordinary to you?

Preston is such an old soul. Anyone who has met him has said this. He has such a connection to music. He is not verbal yet, so he finds a way to connect with others thru music and choosing the songs on his iPad on YouTube. He teaches everyone around him the classics. His favorites are Eric Clapton, REM, Leonard Cohen, Duke Ellington, and other classics.

He’s extremely clever and affectionate. His smile truly brightens up everyones moods. He’s so curious about everything. He loves to people-watch and observe. He doesn’t speak yet, but he sings verbally and can certainly carry a tune! He’s very compassionate to others. He loves swimming and taking car rides. His all time favorite is spending time with his daddy in their man cave.

Twins Nathan and Natalia in mom's shopping cart.
Nathan and Natalia

Nathan and Natalia were nominated by their mom, Marcella Almeida

What makes Nathan and Natalia Xtraordinary to you?

Nathan and Natalia are both Xtraordinary in their own ways. Many people think that twins are a lot alike but the only thing they share is the Fragile X diagnosis! Natalia is a feisty little one who loves making everyone laugh. Nathan is as sweet as can be. They are one of a kind in their own ways but their twin bond will help them pull through all the challenges they will face as they grow up.

A young boy who has Fragile X syndrome, Gael Centellas, smiling and holding a huge "Learn to Swim" award for "Well done!"
Gael Centellas

Gael Centellas was nominated by his mom, Kelly Quaye

What makes Gael Xtraordinary to you?

Our family relocated overseas a year ago — all that was familiar became distant and very faraway, which is very stressful for people with Fragile X who rely on consistency and routine. During this past year, Gael has adjusted to a new country, new home, new school, new peers … new everything, but he is thriving!

Now surrounded by extended family and a much slower pace of life, we see him doing things that were beyond challenging or near impossible before. He has become more comfortable in the community, he is making connections with peers, and attending busy sporting events. We are so proud of how Xtraordinary he is, and make sure to tell him that every night before he goes to sleep.

—Kelly Quaye

Collage with a young man, Moses Cisneros, at the airport, playing the drums, with Mickey Mouse, and with Goofy.
Moses Cisneros

Moses Cisneros was nominated by his dad, also Moses Cisneros

What makes Moses Xtraordinary to you?

Moses is such a happy and amazing kid. He will brighten up your day any day. He loves worship music and playing the drums. He has recently started to play the drums at church. He loves traveling and is always down for an adventure. He has overcome so many obstacles in life. He is one of a kind!

—Moses Cisneros

A young boy, Carter, standing on a stairway landing indoors and wearing tennis shoes, dark pants, a white t-shirt, gray jacket, and a big smile.

Carter was nominated by his mom, Marcella Almeida

What makes Carter Xtraordinary to you?

Carter is an amazing little boy. He can brighten up anyone’s day with just a smile. Even with all the challenges he faces he always wakes up happy and carefree. Anyone who is involved in his life sees a new perspective for happiness.

—Marcella Almeida

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Joshua Frank

Joshua Frank was nominated by his sister Marcia Schouten

What makes Joshua Xtraordinary to you?

Josh learned how to golf and still does to this day with my father. He’s pretty good, has fairly good control, and is aware of the course.

—Marcia Schouten

A young girl, Alannah, standing with very good posture on a walkway, and wearing a pink t-shirt, denim shorts, and pink shoes.

Alannah was nominated by her mom, Brid Quinn

What makes Alannah Xtraordinary to you?

Alannah is our beautiful 9-year-old daughter who came into our life like a bolt of lightning and hasn’t stopped lighting up our lives since. She’s funny & caring, loves music and dance. She lights up our family everyday with her amazing smile. She’s loved by everyone who meets her and especially her family.

—Brid Quinn

A young boy, Noah, sitting on his bed and playing air drums.

Noah was nominated by his mom, Andrea Miller

What makes Noah Xtraordinary to you?

Noah is amazingly talented, empathetic, encouraging, and goofy.

—Andrea Miller

A young man, Andrew Frech, wearing a shirt and tie, sitting on a couch next to his dog.
Andrew Frech

Andrew Frech was nominated by his grandmother, Rita Morley

What makes Andrew Xtraordinary to you?

Andrew is my terrific soon-to-be 19-year-old grandson. He’s a supportive brother to Jason who also has FragileX. He has a great attitude toward every task he takes on. He perseveres through difficulties. He just started a Transitional Living Program↗ and enjoys interacting with his peers. Andrew’s favorite thing is to talk about sports teams and athletes with anyone who will listen. He is kind and patient and I especially love his winning smile.

—Rita Morley

A young boy, Seth Newman, sitting in a carseat with his seatbelt on.
Seth Newman

Seth Newman was nominated by his mom, Taniele Newman

What makes Seth Xtraordinary to you?

Seth was diagnosed with Fragile X syndrome at 3 years old. What makes him Xtraordinary is his passion for adventure and his curiosity. He is tenacious but loving. He loves being outdoors exploring and loves car rides. He is the most affectionate boy ever. We love him so much for everything that he is and will be!

—Taniele Newman

Nathan Hesling outdoors wearing jeans, a sweatshirt, and baseball cap, holding a fish he just caught.
Nathan Hesling

Nathan Hesling was nominated by his mom, Joyce Hesling

What makes Nathan Xtraordinary to you?

Nathan loves to fish, go to the gym, and ride his bike to my work to give hugs to my coworkers. He has the best bear hugs and is good at making people feel special. He enjoys his family and hanging with his dog. He is a great help around the house. Nate is a blessing to all who know him❣️

—Joyce Hesling

Orion as a baby with his mother, and as a young adult sitting cross-legged in the sunshine.

Orion was nominated by his mom, Joyce Hesling

What makes Orion Xtraordinary to you?

Orion is a ray of sunshine. His smile is infectious and he lights up a room with his personality. He greets his friends and caregivers with a big hug, unconditional love, and the best attitude. He has the ability to turn anyone’s day from bad to great and makes everyone feel important and loved. He may even serenade you with some “Old Time Rock and Roll.” He is bigger than life.

—Joyce Hesling

Please visit page 1 to learn more or to nominate your xtraordinary individual.