Xtraordinary Individuals

What makes Miles Xtraordinary to you?

Miles delights in life’s simple pleasures and inspires the same fun-loving attitude in all those who come to know him. His progress is measured by perseverance, not comparison. Though his milestones may look different or be achieved on a slightly different timeline, every skill he gains is built on resilience and effort. Miles is forging his own path, and constantly changing the hearts and minds of those around him. He has a wonderful team of family, friends, and practitioners around him who believe deeply in his potential. We love our sweet Miles more than words can say. His father and I are beyond proud of him and all he’s achieved in his almost-two years of life.

Special Facts

• Miles’ favorite food is salmon 🍣
• His favorite song is Barney’s “If All the Raindrops” 🦖
• And his favorite activity is swimming 🏊‍♂️

How has the NFXF helped you?

NFXF made the early days of diagnosis seem a lot less daunting and lonely, and has made it possible through some reimbursement benefits for us to travel to out-of-state clinics to participate in specialized research.

What makes Diego Xtraordinary to you?

Diego is the sweetest, most loving little boy. His smile lights up any room. He is always happy. He works hard and shines bright every day!

What makes Zac Xtraordinary to you?

Zac has a contagious laugh, and his smile can brighten any room. He makes people around him happy. He loves everyone, especially Jesus! Even when things are hard, he keeps trying until he accomplishes it. He is the most loyal, loving, and kind person. He remembers and hears everything. He reminds me of things like stopping by the pharmacy, what I need at the store, and when I miss my turn. lol! I am so blessed God chose me to be his mom!

Special Facts

• Zac has great imitative skills and loves to make people laugh.
• Loves to ride horses, travel, and sing gospel music!

How has the NFXF helped you?

The NFXF has given me (us) a wealth of knowledge and resources to see that we are in touch with the latest treatments, doctors, and to answer any questions we may have.

What makes Christopher Xtraordinary to you?

Christopher is kind and sensitive. He loves being around kids his own age and loves to make people laugh with his jokes.

Special Facts

• Christopher is a practical joker.
• His favorite food is cheese and pepperoni.
• He loves bowling.

How has the NFXF helped you?

This community is just truly amazing! We all know what we are going through and are there for each other!

What makes Jack Xtraordinary to you?

Jack is a true and loyal friend to our son James. From an early age, Jack showed a genuine interest in getting to know James and in understanding his strengths, along with his challenges.

Jack has never seen any barriers to including James in activities he is planning with other friends. And if there is a potential for a tricky situation, Jack brainstorms solutions and shares his plans with us ahead of time. This is a rare quality in someone his age. Because Jack is such a champion of inclusion, James’ first year in high school has been incredibly meaningful with an ever-widening social circle and lots of opportunities for extracurricular involvement (including but not limited to Best Buddies and Unified Sports).

The respect with which Jack treats James serves as a powerful example of real friendship and has a ripple effect among their peers, encouraging others to do their part to make sure students with disabilities feel like they belong. Jack is a treasure to our family.

Special Facts

• He plays hockey and golf.
• His brain is like an encyclopedia for sports trivia.
• He makes excellent guacamole.

How has the NFXF helped you?

Our family follows the NFXF closely and is grateful to have such detailed information that we can share with everyone who interacts with our son. It’s not always easy to understand the unique interaction and communication styles of individuals with FXS, so being able to refer someone to the NFXF website or social media accounts is immensely helpful.

What makes Megan Xtraordinary to you?

Megan is one of the most loving, gentle, and caring people I know. Her heart is what defines her. She has taught me patience, empathy, and what it means to care. She notices things others miss. If someone is in need of a hug, she knows it and gives them one. Her love is honest and wholehearted. She may experience the world differently from some of us, but she experiences it deeply.

Special Facts

• Spaghetti.
• Music.
• Her newfound love of reading.
• And of course Justin Bieber.

How has the NFXF helped you?

Megan and I have been to two national conferences. We have made lifelong friends with some of the same issues she has. We have learned from the website how to help her navigate through life with FXS, and have shared it with our GPs.

The NFXF has helped my family and me with diagnosing myself, my sisters, my daughter, and my nephews. The insurmountable amount of information NFXF has available is amazing. You guys are great!

What makes Jackson Xtraordinary to you?

Jackson is special in so many ways. His smile can brighten your day, and his laugh just makes your heart melt. He has never let his speech delay stop him from being amazing.

Special Facts

• Jackson loves being outside!
• He likes pizza and his favorite color is green.
• He loves helping around the house.

How has the NFXF helped you?

I have found research opportunities that Jack has participated in and have learned a lot of information through the resources NFXF shares.

What makes Mallory Xtraordinary to you?

Because I do Special Olympics!

Special Facts

• I like Mac and cheese and I like the color of the rainbow!

What makes Patton Xtraordinary to you?

At just 15 months old, Patton was diagnosed with both Fragile X and Scaaf Yang syndrome. Our world has turned into constant doctor appointments and therapy. Patton has been a trooper, always having a good attitude (much better than mom). Everywhere we go, Patton makes a new friend. When Patton was a newborn, he had a baby blessing in our church. It said he would be a light to all. That statement stands true. He is the light of our lives!

Special Facts

• He likes watching the giant ceiling fans in Costco.
• His favorite stuffed animal is an octopus.
• He has the fastest kicking legs in all the land.

What makes Lily Xtraordinary to you?

To us, everything. Her bravery, her communication that no one thought would happen, and the better regulation. And the love she shows.

Special Facts

• She loves mermaids, Nemo, and anything pink or purple

How has the NFXF helped you?

You have helped this mom find her community.