Xtraordinary Individuals

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

1
2
3
4
5
Kolt, 1, walking on his own outdoors; Oaklynn, 3, squatting on green grass; and Adan, 5, smiling.
Kolt Walters, Oaklynn Long & Adan Long

Kolt Walters, Oaklynn Long & Adan Long were nominated by their mom, Haleigh Long

What makes Kolt, Oaklynn & Adan Xtraordinary to you?

My name is Haleigh Long and I am a carrier of Fragile X Syndrome. I have 3 AMAZING children ages 5, 3, and 1. They have overcome so many obstacles and continue to do so.

Adan (5) is diagnosed with Fragile x, autism, and Klinefelter. Oaklynn (3) is diagnosed with Fragile x and autism. Kolt (1) is diagnosed with Fragile X and awaiting autism diagnosis now.

They all enjoy going to the park, reading books, and milkshakes. They have such a positive impact on everyone they meet.

“I thought I would have to teach my children about the world. It turns out I have to teach the world about my child.” —Unknown

I enjoy educating others about Fragile x syndrome and am an advocate for my children. They are so Xtraordinary to me.

—Haleigh Long

Jason Fishman, an adult with Fragile X syndrome, hugging the St. Louis Cardinals mascot.
Jason Fishman

Jason Fishman was nominated by his friend, Jennifer Frobish

What makes Jason Xtraordinary to you?

Jason is an incredible man! He is a devoted friend and family member. He is also dedicated to the Fragile X community. Jason has attended Advocacy Day for many years and has built relationships with legislators that help all of us. He attends the NFXF International Conference and shares his joy with everyone. He plans events for local St. Louis families so we can connect and have fun.

Jason also raises funds to support the Fragile X Resource Center of Missouri by baking homemade dog treats with his brother, David. D&J Doggie Treats are the best! Recently Jason was appointed to the board of the Fragile X Resource Center of Missouri. Jason makes my world so much brighter. I love him and cherish our friendship.

—Jennifer Frobish

A young man with Fragile X syndrome, William "Willie" Gregory, wearing a white dress shirt and tuxedo pants, vest, and bow tie, blonde curls and a winning smile.
William “Willie” Gregory

Willie Gregory was nominated by his teacher, Amy Cornett-Phillips

What makes Willie Xtraordinary to you?

Willie is always positive, lighthearted, and kind to all people. He has many physical and intellectual strengths benefitting himself and those around him. Willie is a lifelong learner, reader, and writer.

His support team has strived to make Willie’s education “most effective,” “ensuring [his] access to the general education curriculum in the regular classroom, to the maximum extent possible, in order to meet developmental goals, and, to the maximum extent possible, the challenging expectations that have been established for all children.” Willie has a unique gift in the area of sports facts. He is knowledgeable and motivated in this arena and has skills in stats and commentary that can be put to use in his postsecondary years.

—Amy Cornett-Phillips
Exceptional Children’s Teacher

Kaiden, a young man with Fragile X syndrome, sitting in the passenger seat of a car and wearing a white dress shirt, khaki pants, and a charming smile.
Kaiden

Kaiden was nominated by his mom, April White

What makes Kaiden Xtraordinary to you?

Kaiden will be 16 in just a few short months and is moving up to high school next year. He struggles with academics but continues to push and strive to do better. He always has a positive attitude and a smile on his face. I’m so proud of him and all his hard work! I know high school is going to bring great things and progress for him!!!

—April White

Shawna, Tara, Samantha, and their mom, Cheryl, having coffee in a cafe.
Shawna, Tara & Samantha

Shawna, Tara & Samantha were nominated by their mom, Cheryl Steiner

What makes Shawna, Tara & Samantha Xtraordinary to you?

When these ladies learned they were carriers they began the journey to learn everything they could about FX. Titles they have: board member on a committee for crippled children and adults, school nurse, audiologist, attendees to several in-person advocates in Washington, D.C. ALL three have taken their children to various studies to be a part in researching FX and ways to help children with FX. They continue to be there for anyone needing information on FX. They are my heroes!

—Cheryl Steiner

X logo placeholder for nomination with no image.
Nancy

Nancy was nominated by her son, Nick Hertzig

What makes Nancy Xtraordinary to you?

She has helped me throughout my life.

—Nick Hertzig

X logo placeholder for nomination with no image.
Mercy, Emi & Andrea

Mercy, Emi & Andrea were nominated by their mom, Marcela Reyna

What makes Mercy, Emi & Andrea Xtraordinary to you?

Mercy, Emi, and Andrea are truly Xtraordinary. My girls are less affected than my son and they both have learned to always care for and protect their brother. Emi is a very happy and outgoing little boy, even with his speech limitations he has many friends and is liked by all who meet him.

—Marcela Reyna

A young medical student, Kaitlin Hencak, wearing her lab coat and a pretty smile.
Katlin Hencak

Katlin Hencak was nominated by her mom, Dannielle O’Hare

What makes Katlin Xtraordinary to you?

My daughter is an amazing sibling to her younger brother who has Fragile X. At age 12, she was determined to work in the field of medicine to help children and adults like her brother.

Katie shadowed Dr. Hagerman while she was in college to get a feel of how she could help. She worked in the stem cell lab at the University of Central Florida, specifically with FXTAS cell lines. Katie was officially accepted into medical school in 2020, and started her first year in July 2020, right in the middle of a pandemic. She just completed her first year and is ready to take on the next. At this current time, she is still interested in pediatrics and working with children with disabilities. Her dedication to her brother and the Fragile X community deserves to be recognized. She has worked with disability groups throughout her time at UCF and continues to find ways to connect with her local disability groups.

—Dannielle O’Hare

Jarvis, and adult with Fragile X syndrome, at work and wearing an apron and a happy smile.
Jarvis

Jarvis was nominated by his mom, Lorraine Warwas

Jesse Rodriguez smiling a huge smile with Shannon Christie and their daughter.
Jesse Rodriguez

Jesse Rodriguez was nominated by his daughter’s mom, Shannon Christie

What makes Austin Xtraordinary to you?

He has been so supportive, he never doubts me, he shows up, he loves me and my daughter so much, he is a team player, he’s hands-on, he never says no, he goes to all the early intervention meetings. She wants to know what is going on, so he reads the books, plays the games, takes over when I’m tired, does the laundry, cleans the house, goes food shopping, has a full-time job, pays the bills, handles all the tantrums (mine and hers LOL), always stays positive, refuses to accept no for an answer when it comes to the limitations of this diagnosis.

He loves me and our daughter so purely and unconditionally since we found out about my status and our daughter’s, he’s never doubted our abilities to thrive in this world. He is beyond Xtraordinary to me.

—Shannon Christie

Austin Loeliger, an adult with Fragile X syndrome, at work wearing his uniform and sharing a huge smile.
Austin Loeliger

Austin Loeliger was nominated by his employer, Caitlin Mcgrath

What makes Austin Xtraordinary to you?

Austin has the brightest personality, which is key to our business. He is one of our “day brighteners” at Wawa store 8068 [West Chester, PA]. Austin creates personal connections with coworkers as well as customers; always remembers birthdays, weekend plans, and family members. He is also quick to do any task when asked, as well as the tasks he is already responsible for. Austin is a staple at our store, loved by both customers and coworkers!

—Caitlin Mcgrath

Barbara Newsome in her kitchen with her grandson showing off a large blanket with a printed letter to her grandson
Carol Sperber

Carol Sperber was nominated by her daughter, Jen Newsome

What makes Carol Xtraordinary to you?

My mama, Carol Sperber, is the most Xtraordinary grandma (and mom too!). Audric Newsome is her firstborn grandchild and was diagnosed with Fragile X syndrome at the age of 3 1/2. She has been there from day one to help us navigate this unique journey. She loves all of her family but I think her Audric holds an Xtra special place in her heart.

—Jen Newsome

Audric Newsome, a young boy with Fragile X syndrome, smiling big and holding a sign reading "July 18 National Fragile X Awareness Month; I'm a Self-Advocate; Different - Not Less."
Audric Newsome

Audric Newsome was nominated by his mom, Jen Newsome

What makes Audric Xtraordinary to you?

Audric was diagnosed with Fragile X syndrome at almost 4 years old. He’s now 14 and thriving!!! It’s been quite the journey but he’s led the way! His name in old English has a meaning “old wise ruler” and he truly lives up to his name! We are so proud of the young man he’s becoming!!! In his words “You’ve raised me since I was 3 and you’re still raising me.” … I think he associates his age of diagnosis to when we started raising him, lol.

Anyway, he’s a pretty cool kid!! He’s a product of his generation and is an “apple device” and YouTube kinda guy. He’s an NBA genius — follows every team, knows who’s out due to injury, where they went to college, height, weight, wife, and kids’ names (if married) and the list goes on! It’s pretty impressive! He enjoys playing his PS5 and hanging out with friends. He’s an only child but has lots of cousins and is incredible with babies!!! He plays sports, rides a bike, and taught himself to swim! Audric is the kinda guy you want to have in your life! He’s empathetic and loving to his family and friends!

—Jen Newsome

X logo placeholder for nomination with no image.
Jerry Davenport, Will Paddock & Ben Paddock

Jerry Davenport, Will Paddock & Ben Paddock were nominated by their mom, Sharon Tresemer

What makes Jerry, Will, and Ben Xtraordinary to you?

I have three Fragile X sons that are Xtraordinary each in their own way: They are unique in their ways and each one compliments the other. It is exciting and amazing to watch them in public and with family. Jerry and Will are pretty shy until they have been around someone for a while. Ben never meets a stranger or hesitates to give hugs. Jerry lives on his own and has a job he enjoys. Will thinks he should be the director of everything and everybody. I love the guys so much and am blessed to have them. They can be challenging each in their own way also.

—Sharon Tresemer

Hannah Grable, a beautiful young woman with Fragile X syndrome, wearing a dark purple shirt and her golden hair in a fancy updo.
Hannah Grable

Hannah Grable was nominated by her mom, Janet Grable

What makes Hannah Xtraordinary to you?

Hannah faces her disabilities with a positive attitude. She never gives up on trying to do better.

—Janet Grable

Tyler Krantz, a young man with Fragile X syndrome, wearing a tank top and shorts with headphones around his neck and standing with a shovel at a marina.
Tyler Krantz

Tyler Krantz was nominated by his program counselor Melissa Masi

What makes Tyler Xtraordinary to you?

Tyler is a student in the Discover Program at Vista Life Innovations in Westbrook, CT. I have had the honor of working with him for two years. Tyler is one of the most dedicated, hard working, and determined individuals I have ever known. Tyler has made such tremendous growth in his functional life skills and emotional management. Tyler is funny, kind, caring, and an absolute joy to know. My heart swells with pride and love for him each and every day!

—Melissa Masi

X logo placeholder for nomination with no image.
Ezzat Elsobky

Ezzat Elsobky was nominated by his protege

What makes Ezzat Xtraordinary to you?

He’s the first person to initiate a specialized, private genetic institute [Egypt] that provides services to patients, families, as well as doctors and clinicians. It provides continuous educational opportunities and introduces the latest techniques in the field of medical genetics.

—Anonymous Professional Provider (and Protege)

Matt Carpenter at left, a young man with Fragile X syndrome, out to dinner with a group of friends.

Matt Carpenter, left, eating out with friends.

Matt Carpenter

Matt Carpenter was nominated by his friend Deby Burgess

What makes Matt Xtraordinary to you?

Matt attended the self advocacy sessions in San Antonio, Texas, then convinced us to hold a smaller regional workshop for individuals with Fragile X in our area. It was very successful!

—Deby Burgess

Laura with one of her young students, who has Fragile X syndrome, smiling at the camera.

Laura, right, with her student.

Laura

Laura was nominated by the mom of one of her students, Carley Rothstein

What makes Laura Xtraordinary to you?

Laura was a teacher in the classroom of the traditional daycare classroom that my son was in where he struggled every day to regulate. She eventually decided to leave the facility, and offered to watch my son at her home with her own daughter. Knowing the bond my son had already formed with her, I immediately jumped at the opportunity. Laura had prior knowledge and experience with autism spectrum disorder, and quickly learned about FX.

Laura has since grown her daycare and now runs a wonderful, inclusive program for typically developing and neurodiverse children (including two kiddos with FXS). She has an entire sensory room, incorporates sensory activities throughout the day, modifies lessons and activities to fit the unique needs of the children, and is flexible and open to having therapists come during the week.

Not only is she an amazing teacher, she is also the only person my son will allow to cut his hair, trim his nails, and even freeze a wart off his foot! She always has a smile on her face, no matter how exhausted I can tell she is. For all of these reasons and many more, Laura is Xtraordinary and we are so thankful that she is part of our lives!

—Carley Rothstein

Kolton Sanders, a young man with Fragile X syndrome, wearing an Aztec Football collared shirt and a winning smile.
Kolton Sanders

Kolton Sanders was nominated by his mom, Sarah Dennis

What makes Kolton Xtraordinary to you?

Kolton is a 15-year-old Xtraordinary boy! Fragile X does not define who he is. It has not stopped him from learning to ride a dirt bike or to swim. He even helps coach a high school football team. The boys have truly embraced him. It is the most amazing thing to watch them all interact. Kolton is the most loving and forgiving person. I have so much admiration for my very special son.

—Sarah Dennis

Stephanie White, a young woman with Fragile X syndrome, sitting with a young boy who has his arm around her shoulder.
Stephanie White

Stephanie White was nominated by her sister, Rebecca Johnson

What makes Stephanie Xtraordinary to you?

Stephanie is just Xtraordianary. She is so kind and caring. She can make anyone smile with her joyous personality. She can talk to anyone about anything. Her tender heart and her willingness to help and give to others. She would give her last dollar or any item she owned to make someone feel better.

—Rebecca Johnson

Preston Levenzon, a young boy wearing a turquoise t-shirt and a mighty spiffy hairdo.
Preston Levenzon

Preston Levenzon was nominated by his dad, Boris Levenzon

What makes Preston Xtraordinary to you?

Despite his diagnosis and inability to verbally communicate, he taught us patience. My son knows he can’t express himself, yet he shows patience for his little sister and all the adults around him including us, his parents. He is our hero.

—Boris Levenzon

Benjamin Smith, a young boy with Fragile X syndrome, outdoors wearing a striped blue dress shirt and a big happy smile.
Benjamin Smith

Benjamin Smith was nominated by his mom, Breea Smith

What makes Benjamin Xtraordinary to you?

Benjamin is a 5-year-old boy with full mutation Fragile X. Benjamin is probably the happiest and loudest boy you will ever meet. His smile and laugh will light up a room! He is full of energy and full of life. He is a very sweet and caring little boy. He loves his big brother Jacob (also with FMFX) and loves to play with his little sister, Lydia.

Benjamin has a helping heart and desire to please. He loves a good joke and loves to play pranks on his family. He loves baseball, video games, hot wheels, and his family and friends. He loves play dates with his close buddies and loves to dance. He brings us so much joy and laughter, and we are so blessed to have him in our life. I am so proud to be your mom!

—Breea Smith

Young boy in a field.
Jacob Smith

Jacob Smith was nominated by his mom, Breea Smith

What makes Jacob Xtraordinary to you?

Jacob is a 9 year old with full mutation Fragile X. Jacob is a kind, caring, and loving young boy. He has the most caring and kind heart, and strives to be a good person, student, and friend. He always tries to lend a helping hand to anyone he meets. He serves others with his whole heart. He is a great big brother to his little brother (also FMFX) and little sister. Jacob is active and enjoys living life to the fullest. He loves video games and baseball and plays on a team with his good friends. Go Texas Rangers!! Jacob is usually always happy and encounters life with a smile and a “happy flap.”

My biggest blessing in life is my children and I am proud to be Jacob’s mother.

—Breea Smith

Miles David Tillman, a young boy with Fragile X syndrome, holding a superhero kevlar balloon.
Miles David Tillman

Miles David Tillman was nominated by his mom, Brittney Tillman

What makes Miles Xtraordinary to you?

Miles doesn’t know a stranger. He brings joy to the people he meets with his contagious laugh, great sense of humor, and huge heart. He hasn’t met a challenge that he isn’t ready to overcome. Miles loves any type of sport, but especially football. He can also recite just about every song with great passion and any line from a movie, just like the character. He always has been and always will be our Miles of Smiles.

—Brittney Tillman

Nicoloz, a young boy with Fragile X syndrome, wearing glasses and a dark blue polo shirt, standing on a balcony with his hands on the railing.
Nikoloz

Nikoloz was nominated by his mom, Nazhi Tabatadze

What makes Nikoloz Xtraordinary to you?

Nikoloz is a participant of online kids singing competition. He is Xtraordinary singer and spreads smiles and happiness everywhere he goes.

—Nazhi Tabatadze, Georgia

Bramel Maggard, a young boy with Fragile X syndrome, on a tree swing wearing glasses, plaid shirt, jeans, and super happy smile.
Brammal Maggard

Brammal Maggard was nominated by his mom, Maggie Lucas

What makes Brammal Xtraordinary to you?

Bramel has faced many obstacles in his short nearly four years of life. He was born with an encepholocele and had brain surgery when he was one and a half years old to repair it. A few months later he was diagnosed with intellectual disability.

Beyond the brain surgery, he has had tubes placed in his ears, his tonsils and adenoids removed, and has had to be put under anesthesia to have his hearing checked every 3 to 6 months for the last 3 years. He wears a hearing aid and glasses and is nonverbal. He attends speech and occupational therapy and has recently started attending preschool in the special education classroom.

Bramel is one of the strongest little humans with one of the biggest hearts and I am so proud to be able to call him my son.

—Maggie Lucas

Jeriko, a young child with Fragile X syndrome, sitting on his mother's lap on a swing.
Jeriko

Jeriko was nominated by his mom, Lorraine Blubaugh

What makes Jeriko Xtraordinary to you?

Jeriko is a happy, ambitious 3-year-old boy. He amazes me daily although he is nonverbal. Wasn’t meant to help him. He was sent here to save me.

—Lorraine Blubaugh

Matthew with his stepfather Brent Schaumburg.
Brent Schaumburg

Brent Schaumburg was nominated by his wife, Paula Schaumburg

What makes Brent Xtraordinary to you?

Brent and I were set up on a blind date by my sister and brother-in-law in 2006. We had a great time. After that night, we called and talked almost every night, and were together every weekend that I did not have Matthew. I wasn’t ready for Matthew to meet him yet. I needed to know more.

But, I could tell that Brent was someone I wanted a more serious relationship with, so I educated him about Matthew, Fragile X, and autism, and the role Matthew will always play in my life. I needed him to know that as soon as Matthew was born, he became my heart, and I plan on him being with me forever, or until I can longer care for him. I never want him going to a group home where anyone off the street could be taking care of him, or taking advantage of him. Matthew is the love of my life and will always be, something all moms know. I have never thought of him as disabled, he’s just my son like any other person’s son.

Matthew is non-verbal, which means he has no words. Sometimes, this is so frustrating for him that he acts out violently. I have been bitten, kicked, head-butted, and pinched, and I needed to warn Brent about these possibilities.

One evening we decided that Matthew and I would meet Brent at a restaurant and see how things worked out. It was cold, so we had on our coats. Matthew and I walked in, and he took Matthew’s hand, led him to the table, and helped him take off his coat. It was at that point that I fell in love with Brent. I could tell in that moment that kindness and thoughtfulness were in his DNA.

Since the early years, Brent and Matthew have grown to be good friends. Matthew trusts Brent more than anyone else in his life, and respects his word more too.

Matthew’s frustrations sometimes led to full-on melt-downs. Now, if you’ve never seen an autistic person have a melt-down, they can be quite scary for everyone including the individual. There is a point of no return for them, where they can’t bring themselves back down.

For example, the last time I took him to get his haircut, which was several years ago, he did not want to be there. For some reason on this particular day, Matthew did not want to have his hair cut. I had been taking him for years. I am still not sure what triggered it, but Matthew started crying, then crying uncontrollably. He started pulling on my arms and really being loud. Then he threw himself into the floor and was nearly convulsing from crying so hard. I didn’t want to leave because I had been told not to give in to him or he would think that by crying or throwing a fit, he would get out of doing whatever it was he didn’t want to do. It was so bad, that the lady getting her haircut told me that she would get up and let him get his haircut, and then she’d let the girl finish hers. It was bad.

I went home and told Brent what a horrible experience we had both had (with the exception of the kind lady wanting to help us). Matthew had cried so hard, he had red spots all over his face and neck a couple hours later. I had a few bruises on me. The next time, Brent took him. He held his hands down while the beautician cut his hair, and talked calmly to him the entire time. Mission accomplished. Brent has continued taking Matthew to get his hair cut, each time Matthew would get slightly more independent and brave. Slowly, Brent could stop holding Matthew’s hands and just stand by him. This took nearly a year mind you. Eventually, Brent could sit in the chair next to Matthew while he was getting his hair cut. Now, years later, Matthew can sit in one chair, and Brent in another and they can both get their haircut at the same time. Brilliant.

This is not extraordinary for MSgt. Brent Schaumburg, but it is definitely extraordinary for most people. Brent has taken tasks such as this upon himself to help a small child learn and grow.

Brent has taught Matthew to put on his own socks. This maybe took Matthew six years to accomplish, but Brent never wavered. He continues helping Matthew learn to put on pants and shirts, shoes and coats. There is no doubt in my mind that Brent’s tenaciousness will prevail, and Matthew will indeed one day be capable of fully dressing himself.

In addition to the help dressing, Brent took on giving Matthew baths and now showers on most days. Some days, now, Matthew and I can accomplish this task together. But there was a day, when for some reason Matthew was not happy about me giving him his bath. He started crying, so I tried to rush through it. He didn’t appreciate being rushed, which I should have known. But he started pinching at me, anything he could grab ahold of, he was going to pinch it or scratch it. One I didn’t see coming landed hard on the tricep. I screamed STOP PINCHING ME!! Oh boy, talk about waterworks from both of us after that. I knew better than to yell, Matthew has more sensitive hearing than most people, and he doesn’t want to upset people either. We both ended up getting through it, but the next night, Brent said, “Come on buddy, let’s take a bath.” And Brent took over most nights since then.

And it’s not just Matthew that he cares for and is thoughtful about. He used to have most Mondays off while in the Air National Guard. On that Monday, he cleaned the entire house, did all the laundry (including putting it where it belongs), grocery shopped, and put the food away!

We recently moved to KY, but lived in Indiana. And we had Matthew in Special Olympics for equestrian. He really doesn’t show much interest in anything, but he has always loved to ride horses. Brent immediately jumped on board with the equestrian program, helping not only Matthew but several other athletes before and during the games. He also went to the games early to help set up and tear down, which is a whole other adventure when dealing with horses. Washing horses before, cleaning stalls after for example.

He is a gift to me and my son. He was taught by a loving mother and father.

His mother was dying from breast cancer in the winter of 2014. He was three hours away but felt compelled to take time off work and spend time with her. He ended up taking care of her, along with one sister-in-law, for about three weeks until she passed away a couple days before Christmas. The last week, he took care of her every need.

His father was diagnosed with breast cancer this past December, and felt very weak during his chemotherapy treatments. He’s a farmer and couldn’t get his equipment serviced and ready for plowing, tilling, and planting. He would attempt to work, but within half an hour or so, he had to go back inside and rest. As soon as Brent found out, he made arrangements to spend a week up there to help him. He serviced every piece of farm equipment his dad had, and his van, before he came back home. In that same time, Brent was having serious pain up and down his right arm. That didn’t stop him. After he came home, he found out that he had a torn tendon in his elbow. He had to have it surgically removed, and re-attached to the bone, and was put in a cast for healing.

Even in that cast, he was more help to Matthew, me, his family, and his country than any other man I know.

—Paula Schaumburg

Dan Woodard
Dan Woodard

Dan Woodard was nominated by his mom, Carol Woodard

What makes Dan Xtraordinary to you?

He is worth it! Every meeting, every appointment, every therapy session, every insurance battle, every school battle, every service battle… His life has value and he has a lot to say, if you listen with your heart.

—Carol Woodard

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

1
2
3
4
5