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 .

A train conductor near the train and train station.

Valerie Hansen

Valerie Hansen was nominated by her parent, Debbie Morris

What makes Valerie to you?

Valerie is so Xtraordianry!! She has Gus with Fragile X. She, also, has Lee and Joe and her husband, Roger. Valerie was a Special Education teacher and over her department for several years. She’s now a stay-at-home mom/homeschooler. She knew probably early that something was wrong with Gus, when he couldn’t sit up. She recognized so many signs. They ended up in Colorado to get him diagnosed. She has been on top of every therapy, every opporunity for Fragile X since the beginning. Gus first learned to walk with a special walker for little fellas. He can now walk on his on, go up their stairs (he does slide down them 😊) She has learned so many home remedies, healthy options for him and her family. They walk and ride bikes. Always at the park or some activity. Gus loves water and music!! He’s had swimming lessons. All of his therapists love him!! He has the best smile. Gus has a Tablet with all the words that he uses, family pictures, food pictures. He is so fast on it and even makes jokes on it. She is teaching him to learn his sounds with alphabet and numbers. All is just amazing!!! Valerie and family go to a church that supports special needs children. She has just been on every aspect to help Gus thrive that there is. Valerie does all of this while homeschooling, volunteering for church activities and helping at Aspire which is a homeschool environment with other homeschoolers. Valerie could really be an advocate for Fragile X. She’s always been smart and at the top of her class in everything. She gives her all!!!

Special Facts

Valerie’s favorite color is pink. Favorite activity is biking. Favorite food is tacos. Loves to ready.

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

Valerie will be attending the conference in July. NFXF has lots of information and stories about others that helps.

Students of the Corp-osa-Mente Group

These students were nominated by their therapist, Alice Montanaro

What makes these individuals Xtraordinary to you?

I have always believed that a therapist should be a role model for their patients, teaching them how to adapt to various life contexts and how to interact with others. However, the members of the Corp-osa-Mente group, which is a cognitive-behavioral therapy group, have become a role model for me! Indeed, their sincerity and resilience inspire me every day to fight for a better society and to be a better person. When I started working with them, I did not think that the X-universi would have become the focus of my clinical and research work. Over time, however, I have embraced the struggle for the inclusion of people with intellectual disabilities, and I now consider myself a member of this great Italian family that fights for the rights of those with Fragile X syndrome. I really thank all my Italian patients for their love, that in the worst moments of my life, convinced me not to give up!

I “envy” their memory for names and people. No matter how long it has been since they last saw you and no matter how shy they are, their gaze indicates that they know exactly who you are!

I love they way in which they repeat words and sentences when they are anxious. They are so sweet that I cannot stop to sincerely “smile”.

I admire their truly sincerity. They trust everyone and they seem to live in a word without malice.

James B. O’Mara

James B. O’Mara was nominated by his friend, Jamie Gutierrez

What makes James Xtraordinary to you?

James is extraordinary. He brings out the best in everyone! He loves his family and friends, and we love him. James is thoughtful, kind and loyal. He always shares in the joys of the accomplishments of others, and is an enthusiastic cheerleader for all. He is also sensitive to the feelings of others, and genuinely expresses concern for the sadness and woes of those around him. He is gracious and willing to help out. James is generous and hospitable.
Given his vivid imagination and warm sense of humor he and I have enjoyed great storytelling together. On a daily basis he listens to a variety of music, from all genres and styles, and he is always happy singing along to his favorite tunes. He especially has fun performing and singing in his school concerts.

James is inquisitive about the world around him. His sincere interest and curiosity about people and experiences that he encounters can be seen in his very thought-provoking questions that he asks me in our conversations every day.

James has an incredible memory. Each person he meets or hears about leaves a lasting impression on him, and he never forgets them. He will often ask how someone is doing long after he has met them, or seen them.

He enjoys traveling to new places, and wants to share the experiences and sites with the people he loves.

James is extraordinary to me. He brings light, joy and hope to me each day. It is impossible to be sad or to have a bad day when you are with James. Words cannot fully describe what he means to me. I appreciate him, and I am grateful to spend time with James every day. I am continuously inspired by him in immeasurable ways, and I am honored to know him.

Special Facts

James enjoys going out to eat, especially with large groups of family and friends. He is an excellent swimmer. He also a strong interest in cars.

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

NFXF has helped me to learn, and understand more about Fragile X.

Austin Nelson

Austin Nelson was nominated by his sibling, Amanda Nelson

What makes Austin Xtraordinary to you?

He can light up a room as soon as he walks in. He will make you forgot about all the hard things in life and just laugh and have fun. He has always reminded me to live life to the fullest and enjoy the simple things.

Special Facts

He has always wanted to take a trip to Austin Texas I hope to make that dream come true for him soon he loves swimming and dressing up in tuxedos.

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

It has helped with showing us new information and keeping up to date with fx around the world.

Colton Nightingale

Colton Nightingale was nominated by his parent, Rick Nightingale

What makes Colton Xtraordinary to you?

Colton has the biggest heart and draws everyone to him. When we are at school functions everyone stops to say hi and give him a high five, from his classmates to kids in Jr. High and High School. He loves to crack jokes and hype people up. He is gives his best in the sports that he plays and at school. He teaches me every day to have patience and to work hard to overcome the obstacles that are placed before you. Colton loves to say the prayer at dinner and melts my heart when he reaches out to hold hands while we pray at church. Colton has taught me more in his 10 years that I will ever teach him.

Special Facts

Colton loves all sports but especially basketball, his favorite food is cheese, and he loves to fish with his daddy.

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

We have found support and comfort in knowing that the struggles we face with a child with Fragile X aren’t unique to us and that others have gone through and gotten past what we are currently experiencing. NFXF has given us hope for Colton’s future.

Jaxon Jesso

Jaxon Jesso was nominated by his parent, Amiw Reiman

What makes Jaxon Xtraordinary to you?

As a single mother, life for the last 13 years has been a typical blind navigation that all parents travel when it comes to raising a child. Solely and also genetically, it became apparent that my little family – consisting of my son Jaxon, myself and our 2-3 cats always had over the years.. that we would inheritantly face the unknown challenges that come with a FXS diagnosis. Jaxon received his when he was 5. This was an answer to questions at the time and thankfully I had been blessed with more love then I knew what to do with when it came to Jaxon so I was prepared to move mountains. Prior to his formal diagnosis, he had been delayed for all traditional child milestones and taken out of the autism spectrum twice. He was eventually speaking by age 3 and hasn’t stopped to take a breath ever since. (Not kidding, he never stops chatting – even to himself!) We had many therapists in place, extra supports and extra curriculars intended for children with special needs but the actual diagnosis caught me out of left guard. So much to learn and understand but after diving deep into the historical, statistical and foreign to me medical findings… I still believed there had to be more I could do.

That’s when I packed our bags and travelled 16 hours by plane, shuttles and a taxi into the deep jungles of Brazil to see a world reknown healer. Maybe it was the South American sun, maybe it was the cult like experience or maybe it was just my resolved commonsense that suddenly kicked in…but after allowing myself some time to grieve for him and my motherly hopes with biased dreams… We left there no worse the wear. It was the time in our life where I allowed myself the realities that could like ahead, the time to be appreciated no matter how challenging his life would no doubt be.

Jaxon is now 13, taller then my 5’7 self and physically speaking, much the same as any one of the peers his age.

In his grade 4 school year after already investing $30K into a private education the year prior… I felt that we were getting nowhere despite the tutors, IEP, designation resources and afterschool programs. He just didn’t seem like he would ever grasp numbers and letters to advance from basic kindergarten teachings. That’s when we packed up our Toronto, Ontario Canada lives where I had a corporate career and 20years of enjoyed living, to move to Niagara Falls, my hometown and where my parents also reside.

My mother had always offered to homeschool. She’s not a teacher by technical profession but by her inheritant abilities, she has been the right one for Jaxon.

In the last 4 years, Jaxon has progressed academically placing his math foundations at that of a grade 4 and his English at a grade 3. His other subjects while not written but rather recited and absorbed through his way of learning, are at grade level so he KNOWS science, history, geography and physical education. Will he read to me? Absolutely not. For a chatty Cathy talker day to day, Jaxon is quite shy when it comes to his abilities. He acknowledges the differences between himself and kids his age. I encourage him always and pray he can take pride in the things he tries whether he can or cannot fully demonstrate the abilities as much as someone else. Like I tell him, no matter what we do in life…someone can always do it better so we just need to do OUR best. And so he tries consistently.

He is an avid rower at the local club and is well appreciated by the young kids there because Jaxon is innocently hilarious.

Jax can mimic most character voices he hears and also other sounds. He is really into puns although uses them often when the actual context from which it arises from, is missing. But that’s Jax. He has a way of warming your heart out of his genuine empathy and compassion. He is extremely helpful and will perhaps too quickly, jump to lend a hand. Once he has learned how to do a chore or project through hands on demonstration… It may or may not become his new favourite thing.

He loves to cook and is actually very good at following instructions in the kitchen. He can use tools, gardens, swims like a fish, can follow a simple list of 3-5 items in order to grocery shop independently and has started venturing to a local convenient store about a km away by scooter. He has travelled all over with me and is a food conesseur! Our newest thing is back country camping which involves survival skills, strength training, navigation and learning about nature, safety and overall self. I can visibly see his little wheels turning often as he reads the room socially and tries to adept to what others may be saying or doing. I have been broken hearted with the disregard and unwillingness others have had when it comes to getting to know Jaxon as well as warmed from the inside out by those who have adored and appreciated him for all that he is and can be.

As we prepare now for his return to school board education with the entering into highschool next Fall… I worry as every parent does about the interactions and influences he may have. I worry about regression academically and get anxious about the pressures he will face that include social interactions too!

But I don’t worry about his future. The fact is, it will be whatever he wants to make it. Jaxon can get lazy so will always need my push – and that’s okay! If he’s interested in something or made aware of the outcomes possible then he can do anything.

There is a lot to be said for scheduling and routine as with FXers, repetition and mimicking are traits that are highly evolved. The positive influences and those actions exhibited by others are a great attribution to the behaviours mirrored by my son. He has many selves is the best way to put it because he is socially a chameleon. Different environments prevail a different Jaxon. He can conform to the tone, language- both verbal and body, style, mannerisms and even charisma of those he comes in contact with. For many reasons but as it relates to his future responsibilities throughout life at home, personally and within community… I believe many jobs will be possible. He already does side jobs with me and is respectful to residential clients that we do cleaning, yard work and organizing for.

Time and money will always pose him problems as everything is 20 dollars or 20 minutes but generally, if he is told what time to be ready or expect something…he is proficient to a tee.

He does everything fast but I am so proud of his practicing self control as he gets older. Less impulsive and more thoughtful. He is pro at remembering actors and actresses in movies , as well as regurgitating things he’s heard. The context or time to tell me may be completely off but he recalls the most obscure things whenever that time happens for him. Sometimes I can’t keep up and he will lose me in his train of thoughts, however, I’ve found the connection between his communications to be far more advanced then my head allows me to entertain in the moment. His thought connections and database of information he struggles to express at the right time in the right place IS all there and it breaks my heart to see him struggle to get out the facts I know and he knows he has stored in there.

Jaxon is stronger than me in so many ways. He has taught me how to be patient, how to adopt inclusivity and equality into all life settings, how to advocate with purposely and what really matters in life. His positivity is my reason everyday to also be the best version of me that I can. Because he watches. He trusts and admires me. He needs to be lead by example and moreover, he can note how myself and those around us are flawed too! We each have challenges and Fragile X has proven the extraordinary powers that those who are affiliated to it also must have. There is no handbook and while similarities reside for every individual diagnosed , they will all uniquely bless our world with the minds and bodies that God gave them and for the gifts that my son has given me over the years… He could never understand that just his presence alone has allowed my own characteristics and belief system to evolve.

Jaxon makes me thankful and our love for one another outshines anything I’ve ever known. He will see the world. He will touch many lives. He will do as we all do, which is to keep learning everyday and as long as my life allows me…I will forever be a teacher, a friend, a supporter, an advocate, a confidante, a listening ear, an advisor, a stepping stone, an assistant, a referral, a liaison and most importantly, a mother who is learning through HIM as she too grows. His light shines my way.

Special Facts

Loves rowing and basketball, loves the colour blue, loves kittens and elephants, loves sushi

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

We have had support from community involvements and by way of connecting to other families. He have ran the 5K and attended annual BBQs. Access to resources, research and medical information has also been a key foundation for guiding the learning I have needed over the years.

Jack Gibb

Jack Gibb was nominated by his friend, Beth Forschler

What makes Jack Xtraordinary to you?

Family threw a party for my 50th birthday. Of course Jack was invited. Any party, event, or Sunday morning church, are better when Jack is there. Jack loves a gathering. Jack loves people.

Jack and I have been friends for many years. We met at our local church and our friendship began when I started teaching a class for adults with special needs. It didn’t take long for me to see that Jack is a loving and loyal friend. Not only does he like me but he includes me. Not only does he care for me but he prays for me. He is the best kind of friend.

Special Facts

Jack and his family have been hosting a yearly barbecue complete with tent and live music. Jack is the main host. It is his picnic. He looks pleased as he flips burgers for his people. Jack always invites lots of people. I welcome any opportinity to be with Jack and his family, celebrating friendships. Jack is a local mayor of sorts, as a man who cares deeply for his neighbors. Jack’s Mom tells me he is called “Mayor” at works where he is an attendant in the student dining room. He has made many friends in his 25 years at the Culinary Institute of America.

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

Jack was 25 years old when his parents had him tested and were told he has “fragile X”. His Mom is glad they had testing done

knowing has made a difference for her. Being part of the NFXF community has been beneficial for her, as well. She is most grateful for the support of NFXN for her family.

Colby Shmuler

Colby Shmuler was nominated by his parent, Denis Shmuler

What makes Colby Xtraordinary to you?

We wanted to share a life long success story of our son, Colby age 21, who was diagnosed at age 1 impacting our lives forever. At that time, we cried for years but finally after the tears stopped the proactive plan began. We raised him as normally as possible with expectations and teaching him daily skills from cooking, tying shoes, riding a bike (by velcro-ing his shoes to the pedals) learning to speak a word at age 2 and very slow steady progress since then. Then in his teen years he would walk to the bakery about a mile from home to buy a single role with $1 and walk back. We would receive calls from concerned neighbors asking if he needed help and was ok to do this on his own. We always pushed as much independence and life skills as possible with these types of chores. The first time he went to buy bagels I sat in the car for about 20 minutes watching him let people pass since he was on the side of the line to order and didn’t really know how to do it. After watching struggle for so long the line dissipated and he made it to the counter and ran out of the store smiling after ordering and paying for his everything bagel. These are just snippets in our memory but now at age 21 the greatest milestone of all is upon on. Through initial contact and support of the school district which he is now no longer part of he has held a warehouse job loading and sorting boxes for almost a year. A few days ago on November 1st he moved into an apartment with a roommate in a regular building about 10 minutes from our home. He has slept 3 consecutive nights there and we are still alive and so is he. This story is meant for those with little ones that cannot speak or maybe even walk. There is a bright light of opportunity ahead. Get moving with all of the therapies and push and challenge your X-man or X-Woman they have it in them. At age 21 he speaks in about 5-7 word short sentences and cannot really tell you a full detailed story. But he can load the dishwasher, take out the garbage on scheduled days without reminder and take an uber to and from work. This is our amazing story of Colby.

Special Facts

Playing basketball (he is in his 2nd year of special olympics), watching Seinfeld or Guy Fierri Diner’s, Drive-Ins, and Dives on Food Channel, going out and socializing with people he is LOL funny

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

We’ve been part of this community since the beginning when we thought maybe a cure is 5-10 away, but now 20 years later we see that a genetic therapy may be on the horizon we all need to keep pushing. Awareness, support, and shared stories have alwasy been great.

Benjamin Smith

Benjamin Smith was nominated by his parent, Breaa Smith

What makes Benjamin Xtraordinary to you?

Ben is amazing 8 year old! Ben is living with Fragile X Syndrome. He lights up the room with his HUGE smile and joyful disposition. He has a laugh that is contagious and he gives the best hugs and high fives. He loves to be a helper, either at home, at school, or in his community. If you know Ben, you know pure joy! He loves his siblings, Jacob and Lydia, loves his friends, loves video games and watching all Texas sports team with his Dad.

Special Facts

He loves the Texas Rangers, Dallas Cowboys and Dallas Stars!!

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

We love the NFXF articles, the informative video series, and the opportunities that NFXF provides the families.

Collin Gilroy

Collin Gilroy was nominated by his parent, Jennifer Gilroy

What makes Colin Xtraordinary to you?

Despite his Fragile X diagnosis and his other health issues, I have never met a happier person. He has a belly laugh that is impossible not to join in on. He has come so far in his almost 14 years, that I am still amazed by him every day. He has a very limited vocabulary, but he is such a smart dude. Just watching him think is fascinating! He doesn’t let Fragile X or his brain atrophy stop him or slow him down, he turns his disabilities into his super-abilities, and I’m just in awe. The world instantly became a better place the day he was born, and it’s just gotten better since…♥️

Special Facts

Favorite food: Tyson Fun Nuggets, Favorite Show: The Facts of Life (he loves 80’s sitcoms!), Favorite word;No (even when he means yes)😁

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

It’s given me a place to search, a place to get information, a place to help guide me in this journey.

Chris Bartlett

Chris Bartlett was nominated by his wife, Vicki Wilkins

What makes Chris Xtraordinary to you?

Chris does the bulk of primary parenting for our son Theo who has Fragile X Syndrome. He keeps our family life with four busy kids together while I concentrate on my clinical work as a Fragile X doctor and General Pediatrician.

Theo adores his dad and would love to be just like him. They share a love of spicy food, playing in the outdoors, and of animals.

Chris has unstoppable energy and works so hard to maximize Theo’s therapies, learning, and other activities.

We could not manage without Chris’s amazing positive presence!

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

NFXF helped Chris go to the NFXF conference in San Antonio when we were just starting this FXS journey!

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

Agastya Mallur

Agastya Mallur was nominated by his parent, Archana Mallur

What makes Agastya Xtraordinary to you?

Agastya is such a pure soul . He humbles us with his unconditional love, there is absolute no parity or differentiation in the love he shows to his parents or teachers or friends or his pet . It is just pure love. He belongs at another world beyond the common man’s comprehension . His world is only filled with love and smiles.

Special Facts

He loves to go on drives be it grocery shopping with his dad or go shopping with Kathy ( therapist and family member) . Do a drive thru and get fries from Mc Donalds . . Loves to plan schedules for an event or vacation . He is extremely tech savy , he is 10 years old and has a mobile since he loves to call people ( he is a people’s person) and chat with them which is his favorite pass time.

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

NFXF has given us so much visibility into resources , medical breakthroughs trials etc.

Xander Ray

Xander Ray was nominated by his parent, Kelsey Ray

What makes Xander Xtraordinary to you?

Xander is X-ceptional!! He has the biggest heart for people and Jesus! He lights up a room, and cares so much for everyone around him. He is an over comer, and is my hero. I have learned so much about love and forgiveness being his mother, and seeing the world through his eyes has been the biggest blessing in my life ! He finds joy in the simple things in life and puts a smile on everyone face!

Special Facts

He loves Wacky Wavy Inflatable Tube Men, his favorite food is chicken fries, and he loves snuggles

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

NFXF has been a trusted source of information since first learning of Xander’s diagnosis and learning I am a pre mutation carrier. We have been able to learn and share information about Fragile X in a way that is easy to understand and advocate !

Asher Petersen

Asher Petersen was nominated by his parent, Sarah Petersen

What makes Asher Xtraordinary to you?

Asher radiates joy and sunshine. He is kind, super funny and a little mischievous. He works incredibly hard everyday to accomplish daily tasks and learn new things. He is the biggest cheerleader, for himself and everyone around him – he loves to clap and sing!

Special Facts

Asher loves to eat and try all kinds of fun foods. He loves to go for walks to the playground and run as fast as he can. Books are his absolute favorite thing, we could sit and read together all day long!

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

The NFXF has helped our family by providing invaluable information about and resources for living with Fragile X Syndrome. We love following Instagram and seeing the other Xtraordinary individuals and news articles. You help us feel not so alone!

— Ashley Coon

Knox Burnette

Knox Burnette was nominated by his parent, Sarah Petersen

What makes Knox Xtraordinary to you?

Knox’s “old soul” is Xtraordinary. He was born this way, considering everyone and everything around him. He looked straight into my eyes the first time I held him.

Special Facts

Knox loves books, music and is so affectionate. He has a tender heart and loves playing at the park.

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

By supporting us with information, research, and connection to other people living with FXS.

Jacob Smith

Jacob Smith was nominated by his parent, Breea Smith

What makes Jacob Xtraordinary to you?

Jacob is an Xtraordinary young boy! He was recently awarded the Every Day Every Student Award by his Elementary school principal. This is a nomination that only ONE person out of the school is chosen for. Jacob received the award for his hard work in the classroom, perseverance with his school work, for always giving his best effort and for embodying kindness in all he does. Jacob is an 11 year old 5th grader with Fragile X Syndrome, he works hard in all he does and he is becoming a self advocate for himself. He will share his Fragile X Diagnosis with others openly. He is one of the kindness human beings I have ever known, his empathy for others is outstanding. I am honored to be his mother.

Special Facts

Jacob made the competitive swim team and enjoys swimming at the local swim meets, his favorite stroke is freestyle.

Robert "Scotty" Crisp

Robert "Scotty" Crisp was nominated by his sibling, Kevin Larson

What makes Robert Xtraordinary to you?

Scott loves sports and participates in many special Olympic events here in Washington. He's also a valued employee at our warehouse at Urban Delivery Service.

Special Facts

Loves Cartoons, playing sports and he's an awesome Uncle

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

I've been taking care of Scotty since his mom passed away 3 years ago. He has taught me to not take life so seriously and to stop and smell the roses every once in a while. He's very caring and loves his family.

Michael Smilanich

Michael Smilanich was nominated by his aunt, Patrice Mellusa

What makes Michael Xtraordinary to you?

Michael is loving, helpful and has a sense of humor that just makes me smile when I am having a bad day.

Special Facts

Favorite foods, pizza, Pepsi, popcorn

Rey

Rey was nominated by his parent, Jacqueline Camillo

What makes Rey Xtraordinary to you?

Rey is completely non verbal, but you can tell it all with that big smile.

Special Facts

Rey loves to jump, play in the water and cuddles with Dad.

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

When we first got Rey’s diagnosis we went right to NXFX.com and educated ourselves about Dr. Hagerman and how to best help out son.

Caleb Brown

Caleb was nominated by his parent, Sharon Brown

What makes Caleb Xtraordinary to you?

Caleb is so loveable. He is a very happy guy! He loves old time game shows so you will usually find him watching Buzzer channel on tv and also watching Family Feud or Classic Concentration on YouTube with his computer (at the same time). He loves to laugh and dance and sing, and even though he is nonverbal he still makes noise and it is rhythmically correct. He is spoiled and knows it! He sends mom a text for food and of course she will usually get him some grilled chicken and onion rings.

Caleb was diagnosed around the age of 3 with Fragile X with autistic tendencies and a seizure disorder. For his 3rd birthday his grandma bought him an Ojo from the Disney store at our local mall. It was love at first site and Ojo (thank you eBay sellers) has been with Caleb since. Caleb and Ojo have a special connection, they go nose to nose and can have a full on conversation. It is truly amazing to witness. Ojo tried to attend school back in the day with Caleb but was not always allowed, however sometimes she would sneak in to the backpack and go anyway. 👩‍🏫 a note or phone call from the teacher usually followed. 🤣🤣
I can’t imagine our lives without Caleb being exactly who he is, there is so much love in my ❤️ for that kiddo!"

Special Facts

Favorite clothes to wear are pajamas. Best friend is Ojo from Bear in the Big Blue House!

Landon Crump

Landon Crump was nominated by his parent, Emile Crump

What makes Landon Xtraordinary to you?

Landon is Xtraordinary in everything he does! His contagious smile brightens everyone’s day. Landon loves to be put to work, he always says “Mom I’m going to have a job like Dad one day” he is motivated to learn, he pushes himself to be the best he can be. He is a wonderful friend, he’s kind, loving, thoughtful, funny, he’s even got some pretty cool dance moves!

Landon is my love bug, he asks me for a hug every 5-10 minutes. He wants kisses and to hold my hand numerous times a day. If fragile X syndrome has taught me anything, it’s patience. Some days I ask myself if I’m doing enough, saying enough. But then I wake up every day to his smile and it reminds me I must be doing something right.

We love you son! Keep being YOU.

Special Facts: Landon’s loves to play sports, he’s a great soccer player. He loves pizza & cheeseburgers. If you ask him what his favorite holiday is, he would tell you Halloween because he can be anything he wants to be that day!

How has the NFXF helped you or your family?
It was a wonderful day when I found NFXF, the information and resources provided have been very useful, and the days I’m feeling down I know I’m not alone & we’re all in this together #fragileXstrong 💪🏻

—Emilea Crump

Sam Poncher

Sam Poncher was nominated by his family member, Anne Luttrell Borg

What makes Sam Xtraordinary to you?

Sam is an exceptional young man. His sweet disposition, ready smile, and loving nature makes him such a remarkable addition to our family. Sometimes quiet and shy but always thinking and trying. He is conscientious and does well in school. The future for Sam looks bright!

Special Facts

Sam has many interests and passion. He loves trainsand one of his favorite past times is riding the train around the loop in Chicago. He knows all the routes by name as well as the bus routes. He recently took a cooking class and now is a budding chef. A cookbook for his latest birthday is a favorite gift that he selects what he wants to try next. His gentle soul makes him special with animals. He has 2 pug puppies that are his joy. Sam is also learning to sail and he and his dad explore Lake Michigan during the summer.

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

When was first diagnosed with Fragile X, the world seemed to turn upside down for our entire family. The support and education that NFXF provided then and still does today has been incredible. Thank you.

Cameron Britton

Cameron Britton was nominated by his parents, Anthony & Joanna Britton

What makes Cameron Xtraordinary to you?

Camerons ability to love unconditionally never ceases to amaze us.

Special Facts

Cameron loves to feed the fish with his dad at a nearby natural pond.

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

The NXFX is a wealth of information and resources. We are better parents because they are there.

Sam Hatam

Sam Hatam was nominated by his parent, Sherri Hatam

What makes Sam Xtraordinary to you?

Sam is the kindest and sweetest young man. We always tell him that he has a heart of gold. He cares about everyone around him and showers us with love. He has an incredible sense of humor and a smile that lights up the room. He’s almost 25 years old and we couldn’t be more proud of him, He works hard and makes progress every single day. I’m so lucky to be his mom.

Special Facts

Loves the wiggles hot potato, loves going for walks, and loves shooting hoops

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

We depend on and are grateful for all the great information and resources of NFXF.

Nicholas Hertzig

Nicholas Hertzig was nominated by his family member, Kathleen Furman

What makes Nicholas Xtraordinary to you?

Nicholas is 31 years old and assists me every time his grandfather’s aide is on vacation, usually two weeks at a time. This is no easy task as my husband Jack, Nick’s grandfather, has FXTAS, and is totally dependent on others in every aspect of daily life. Nicholas has learned to operate the hoyer lift to move Jack from the bed to a wheelchair or a recliner and vise versa back to bed. Additionally, he assists in bathing, changing and dressing his grandfather. Nick prepares breakfast and feeds his grandfather. Monitoring the daily medications, keeping track of when his sugar level should be checked and helping with chores of garbage disposal, monitoring supplies and laundry are activities that Nick does without being asked. He does all of these things while working part time in a hospital. Because of Nick and his parents and sister driving him to and fro we are able to give my husband the best possible care. Nick is our heavenly gift. No one fills his shoes.

Special Facts

Nick is easygoing, putting others first. Even when he himself is tired performing caregiving and working at the hospital, he complains little. He wants his grandfather to be comfortable and will do anything for him.

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

NFXF has provided invaluable information on living with FragileX and FXTAS.

Gunner Allen

Gunner Allen was nominated by his parent

What makes Gunner Xtraordinary to you?

He is my miracle boy. He loves to sing and make people smile. He’s a delightful young man

Special Facts

He loves books and school buses and animals

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

Yes very much. My entire family has been through a lot and we each have one or 2 fragile X children

Jarren Coon

Jarren Coon was nominated by his parent, Ashley Coon

What makes Jarren Xtraordinary to you?

Jarren has an Xtraordinary smile that melts anyone's heart! He is the sweetest, loving, happy-go-lucky guy. He has come so far with the best smile on his face the whole way!

Special Facts: Jarren loves riding his little go-cart and absolutely loves water. Jarren's favorite book is It’s Okay To Be Different.

How has the NFXF helped you or your family?
Resources, and support.

— Ashley Coon

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

Lisa

Lisa was nominated by her parent, Lisa Grooms

What makes Lisa Xtraordinary to you?

Lisa works endlessly to care for her younger Brother who also has fx. Lisa and Steven both have fx but Lisa functions normally except for anxiety. Lisa is a home attendant for Steven and She works full time for a local School as a Teacher Assistant. She’s been with that School for over 25 years. Last year She Graduated with a 4 yr College degree. She loves Children and they love her, Lisa meets no strangers She can spark up a conversation with anyone who is willing. Lisa loves People and they love her. She always has a smile on her face. She is a big help to our family, and She volunteers at her Church.

Special Facts

Lisa loves the Dallas Cowboys, She loves her family and She loves diet Dp.

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

We have received good information and advice on fx and learn more everyday.

Kyle Grove

Kyle Grove was nominated by his parent, Lisa Grove

What makes Kyle Xtraordinary to you?

Kyle is a 36-year-old man with FXS. Kyle has always been a social guy, he loves people, and if he meets you once, most likely he will remember your face!

We are so proud of Kyle! Kyle went out by himself and applied for what he thought would be (and is) his dream job. He was immediately hired as a food/beverage runner for a local tourist train. He was recently promoted to guest liaison and narrates the history of the area and train. The leadership at the train comments that they’d hire 10 Kyles if they could because of his work ethic and cheerful and uplifting personality. He is always helpful and would work 40 hours if he could do so!

Kyle also volunteers with Meals on Wheels and the people love to see him there as well as he’s a very social guy.

Special Facts

Kyle loves pizza, the Denver Broncos, and the Colorado Avalanche.

How has the NFXF helped you and your family?

NFXF has been a beneficial help with online resources over 20 years that helped our family.

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

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

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

Maria

Maria was nominated by her family member, April White

What makes Maria Xtraordinary to you?

My niece is kind and outgoing! She fighting her battles daily and is doing a great job striving!

Special Facts

Maria is full mutation fx- she is making good grades in school, she has friends, she suffered from depression and anxiety but she is a fighter and is overcoming those daily battles! I’m very proud of her!

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

NFX helps answer all the daily questions and provides online tools for this.

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

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 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.

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.

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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

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

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.

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💚 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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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

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

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

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

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

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

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

Willie

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.

Nathan

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

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

Heather

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.

Alaina

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.

Beau

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

Joe

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.

Adyah

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

Kristen

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

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

Grace

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.

Edward

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

Paul

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.

Harrison

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

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

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

Jose in front of a Christmas tree wearing jeans, boots, and a cowboy hat.

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

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

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