4-year-old Campbellsburg boy with rare genetic condition hoping to be in his new home by Christmas

By Sharon Estep

Ryder Johnson is a bright-eyed 4-year-old with a contagious laugh and a smile that lights up every room he enters. Despite his joyful demeanor, Ryder faces challenges that most children his age don't. Weighing just 25 pounds, he suffers from an extremely rare genetic mutation known as Xq23 deletion, a condition that affects his growth and development. His mother, Chelsea, and father, Hunter, have been on a remarkable journey with him, filled with both hurdles and triumphs.

Xq23 deletion is a chromosomal condition so rare that there are only a handful of known cases in the world, according to Dr. Molly McFerrin, a geneticist at Riley Hospital. Ryder's missing part of the X chromosome has led to a variety of complex medical needs, and his daily routine includes visits to no fewer than 10 specialists. His medical team includes experts in pulmonary care, gastroenterology, sleep medicine, endocrinology, genetics, neurology, cardiology, developmental pediatrics, vision, hearing, and therapies for speech, physical, and occupational development.

For Ryder, navigating these challenges requires the assistance of hearing aids, glasses, leg braces, and a G-tube for feeding. His limited verbal communication and physical difficulties don't home him back from finding joy in the world around him. “None of that interferes with the pure joy he gets from playing,” his mother Chelsea shares. Despite the challenges, Ryder's love for life shines through every day.

The support from his medical team and his family has been critical in helping Ryder make significant progress. “His doctors have seen him come a long way. They are in awe,” Chelsea says, reflecting on how much her son has overcome. The road ahead remains long, with more milestones to reach, but looking back at how far Ryder has come fills Chelsea with pride and hope. “It's really beautiful to look back and see how far he's come,” she says.

Ryder's story is one of resilience, strength, and love. For a little boy facing such a rare condition, his presence has a huge impact on those around him, inspiring his family, doctors, and community with his ability to find joy in the simplest moments.

The community of Campbellsburg has rallied around Ryder and his family, and the support has extended far beyond their hometown. Ryder who faces daily challenges, has inspired both local residents and organizations to come together in a heartwarming effort: building a new, accessible home for Ryder and his family. The goal is to have Ryder in his new home by Christmas.

This new home is being designed with Ryder's unique needs in mind, making sure it can accommodate his specialty equipment and provide a safe, comfortable environment as he continues to grow and develop. To make this dream a reality, several organizations have joined forces with the community, including Hopewithahammer.org, which builds homes at cost, with no charge for labor. Additionally, the Tulip Street Deaf Crew and Building Bridges are working to raise awareness and funds for Ryder's new home.

There are many ways you can help bring this dream to life:

• Donate to Ryder's Go Fund Me page at gofundme.com.

• Purchase a Team Ryder t-shirt to show your support.

• Pray for Ryder and his family as they navigate these challenging times.

If you're interested in donating or volunteering, you can contact Anita Teeter at (812) 653-2403, hopewithahammer.org, or reach out to Chelsea and Hunter Johnson at (502) 836-9592.

With the help of generous hearts and hardworking hands, Ryder's new home will soon be a reality, offering him a space to thrive and continue to inspire those around him.