Xtraordinary Individuals

What makes Jami Xtraordinary to you?

Loveable, capable, helpful, and I love his hugs.

Special Facts:

• Purple, pizza, sports, music, camp, loves Jesus.
• He has a wonderful smile that lights up my heart.

What makes Zachary Xtraordinary to you?

Zachary loves like no other. His smile and hugs can turn a bad day good. He amazes me each and every day with the things he can do.

Special Facts:

• Zachary loved Kid Rock and playing video games.
• He loves the color orange.
• His favorite food is cheeseburgers.

What makes Joseph Xtraordinary to you?

Joseph is a very loving and happy boy! He’s never sad, always smiling! Joseph faces some challenges, like not walking by himself, but we work with him every day. He doesn’t let that stop him from getting from one place to another!

Special Facts:

• Joseph loves anything food!
• He never passes anything down.
• He’s a loving little boy and he’s always smiling.
• He loves watching Bluey and he loves playing with his sister and brother!!

What makes Preston Xtraordinary to you?

Preston is truly one of the kindest souls you’ll ever meet. He’s the type of kid who would give up all his favorite things just to see someone else smile. He has a heart of gold and a natural gift for bringing joy to others. Whether he’s organizing, tidying up, or simply being himself, Preston has a way of turning even the gloomiest day around. His kindness and light are simply unforgettable.

Special Facts:

• Preston loves sushi, taking long car rides and people watching.

What makes Lailah Xtraordinary to you?

Lailah is one of the strongest and most resilient girls I’ve ever known. She’s fierce, full of sass, and never afraid to speak her mind or go after what she wants. But beneath that bold spirit is a heart full of love and kindness. She shares a beautiful bond with her best friend and brother, Preston. Lailah is incredibly bright, with a vocabulary that constantly amazes everyone around her. She has faced and overcome so many challenges with grace and determination, and continues to inspire us all.

Special Facts:

• Lailah loves to be the center of attention, dressing up, and going out shopping.
• She loves animals and is a farm animal whisperer.
• Her favorite colors are pink and purple.

What makes Caragan Xtraordinary to you?

Caragan is xtraordinary to me because she is the most outgoing, brave, strong, and loving young lady. She was quite popular in school, and everyone in our community knows and loves her. Although she has a full mutation, she’s a true inspiration to many!

Special Facts:

• She loves to play softball.
• She works out at the local gym daily.
• The Texas Rangers are her favorite baseball team.

How has the NFXF helped you or Caragan?

NFXF has helped to educate me on all things Fragile X syndrome and bring important awareness as well. I appreciate them advocating for Fragile X.

What makes Justin Xtraordinary to you?

He loves all sports — especially basketball & baseball. Loves Special Olympics & all his friends & coaches. Loves being an uncle to his niece and nephew.

Special Facts:

• He’s a sometimes reluctant travel companion.
• Loves the theater (especially musicals) & movies.
• Loves going to his job at Home Depot!

What makes Max Xtraordinary to you?

Max is easygoing, fun, and always ready for what each day holds. He is resilient and strong and doesn’t let anything get in his way.

Special Facts

• Max loves music and listens to a variety of his favorite songs every day.
• He loves to go to the beach to wade in the water and splash in the waves.
• He loves to ride in the car and is a great road trip pal!

How has the NFXF helped you or Max?

Max is transitioning into adulthood, and I have looked to this site many times for “what to do” or “what comes next.” It’s like finding a group that speaks my language and answers my questions. It’s like finding familiarity in families just like ours, parents and professionals alike.

What makes Garry Xtraordinary to you?

Garry was born in 1956 and did not get diagnosed immediately, obviously because they didn’t know how to test for it. He was my brother, and although doctors said he would only live to teenage years, he proved them wrong and lived till 66 years of age. He did life his way. And despite all his challenges, he was such a sweetheart. He made me laugh and cry. The people who cared for him in his group home loved him, and he was very special to them and to me. Our parents died at a young age, so it was always Garry and me. He influenced my career in special education. I made so many good friends because of him.

Special Facts

• Garry loved Ohio State football, the Cleveland Browns, and anything related to basketball.
• He loved coffee and diet Pepsi and French fries from McDonald’s. It had to be McDonald’s fries. His favorite meal: cheeseburger and fries anytime we went out to eat.

How has the NFXF helped you or Garry?

I share information about FX on my Facebook page because many people have never heard of it and donʼt understand the syndrome.

What makes Gio Xtraordinary to you?

Gio loves everyone and has super social skills. He greets everyone with a fist bump and “Hi, how are you doing?” He loves to celebrate and congratulate his friends and family, no matter how big or small the accomplishment, with a thumbs up and a “good job!” or an “all right!, yeah!” He is full of cheer, his positive energy is contagious.

Special Facts

• Gio lives on the lakeshore of Lake Erie and goes to the beach every day the weather allows.
• He is a strong swimmer.
• He loves Shrek and does great impressions of all the characters.
• His favorite food is pizza, especially the one that comes from an orange box!

How has the NFXF helped you or Gio?

NFXF is a great resource for us. Everything on the website is relatable. I have passed articles to his school staff, doctors, and family members. I also love to read about other families, their backgrounds, and their stories.