Our story
When Bedford was born, we never imagined the journey ahead. Around 15 months old, we realized something wasn't quite right. What we thought might be a simple orthopedic issue led to genetic testing and a diagnosis of Schwartz-Jampel Syndrome (SJS) - a condition so rare that very few families have ever heard of it. When you look up the numbers, it’s clear this is a “one in a billion” diagnosis.
Like any parents, our minds filled with questions about his future. But Bedford has taught us far more than we've taught him.
Every day, he faces challenges that most of us never think twice about. Yet he approaches each one with determination, joy, and resilience. Watching him has changed the way we see strength. It's not about what comes easily—it's about refusing to give up when things are hard.
When we started sharing parts of Bedford's journey online, our goal wasn't to go viral. We simply wanted other families facing rare diagnoses to know they weren't alone. Instead, millions of people connected with Bedford’s story because they saw something universal: perseverance, hope, and the power of celebrating every victory, no matter how small.
More than anything, we hope Bedford's story reminds people that every child has value, every child deserves to belong, and that our differences don't define our potential. As his parents, we couldn't be more proud of the little boy who continues to inspire us—and so many others—every single day.
Today - our challenge is to Meet You At The Curb, just like Bedford has to every day in order to push through the hard things he faces.
What is Schwartz-Jampel Syndrome (SJS)?
Bedford was diagnosed with Schwartz-Jampel Syndrome (SJS), an extremely rare genetic disorder that affects the muscles and bones. With so few documented cases around the world, it's a condition that many medical professionals will never encounter during their careers. We’re talking “one in a billion”.
Like most parents receiving a rare diagnosis, we quickly learned that there wasn't a handbook to follow. Many cases with Schwartz-Jampel Syndrome are also a bit different from one another, and there are still many questions that researchers don't have answers to.
SJS is a genetic condition that causes muscles to stay contracted longer than they should, basically at all times. Instead of relaxing normally after movement, the muscles remain tight and stiff. Over time, this affects mobility, posture, joint movement, and bone development. We’ve seen that most that have eye and mouth/teeth issues as well.
Children with SJS often have shorter stature, joint stiffness, muscle tightness, and unique facial characteristics. Many also experience delays in motor development because everyday movements require significantly more effort.
While the condition presents physical challenges, it does not impact intelligence, personality, or a child's ability to experience joy, learn, build relationships, and contribute to the world.
How SJS Impacts Bedford
For Bedford, Schwartz-Jampel Syndrome shows up in countless little moments throughout the day.
Walking takes more concentration. Stepping off a curb or climbing onto the couch isn't something he can do without thinking about it. Running, balancing, getting up from the floor, and navigating uneven ground all require extra effort because his muscles don't move as freely as most children's do. Bedford can’t even sit in a chair the way we do.
He also spends a significant amount of time in physical therapy, medical appointments, and evaluations designed to help him stay as mobile and independent as possible. His sleep (and ours) is definitely impacted, and potty training is a much larger challenge.
Many of the milestones parents naturally celebrate—taking first steps, climbing stairs, jumping, or simply keeping up with other kids on the playground—have taken longer and required far more work.
