A Life-Changing Summer: Our Family’s Journey to XLH Camp at the Center for Courageous Kids

When people ask me what the most meaningful part of my work with the Canadian XLH Network has been, they often expect me to talk about the conferences I’ve attended across the globe, the brilliant medical professionals I’ve met, or the opportunities to stand in historic cities shoulder to shoulder with leaders in rare disease research. And those experiences have been incredible—I’ve shaken hands with some of the brightest minds in medicine, forged collaborations that continue to shape our mission, and built friendships I will cherish for life. But none of that compares to the week my family spent this summer at CCK—the Center for Courageous Kids—in Scottsville, Kentucky.

Thanks to the generosity of Kyowa Kirin, the XLH Network, and the support of the Canadian XLH Network, a couple Canadian families were given the chance to attend XLH Camp this year, and ours was one of them. It’s difficult to put into words how profoundly this experience has touched us, but I want to try—because I believe every family impacted by XLH should know what a place like this can mean.

A Journey Into the Heart of Kentucky

Our adventure began not in Kentucky, but in Nashville, Tennessee—the closest international airport to Scottsville. None of us had ever been to the region before, so we carved out an extra day to explore. Nashville, with its soulful music history, neon-lit streets, and southern charm, was a delightful surprise. We wandered through bustling sidewalks, took in live music that seemed to spill from every corner, and felt the energy of a city that lives and breathes creativity.

That evening, we were fortunate to enjoy dinner with two other XLH families who had also flown into Nashville before making the drive to camp the following morning. Over plates of Southern comfort food, we swapped stories, shared our children’s excitement, and began building connections that would grow even deeper once we all arrived at CCK. It was a warm and grounding way to begin our journey—already reminding us that this trip was about more than a camp; it was about community.

The next morning, we packed up our rental car and began the drive toward Scottsville. What I expected to be a straightforward road trip turned into one of the most beautiful drives we’ve ever taken. Winding roads hugged the smoky mountains, rocky cliffs loomed dramatically, and the landscape unfolded in every imaginable shade of green. It felt like the earth itself was preparing us for something special.

As the roads narrowed into rural countryside, anticipation built. Finally, the gates of CCK came into view. Behind them stretched a property that felt like a world of its own: white buildings capped with cheerful blue rooftops, rolling green hills, a sparkling pond, and thick woods surrounding the camp like a protective embrace. My children pressed their faces to the windows, wide-eyed and silent in awe. We had arrived.

Orientation Night: A Warm Welcome

That first evening set the tone for the week ahead. Families settled into their lodges—each one equipped with spacious dorm-style rooms, private bathrooms, and welcoming lounge spaces. My boys immediately bolted to the 24-hour gym, thrilled to discover a basketball court waiting just for them.

Later, everyone gathered in the grand hall for a country-and-western-themed welcome dinner. Imagine golden fried chicken, fluffy biscuits, creamy potatoes, white gravy, and desserts that could tempt anyone into seconds. Many campers showed up in cowboy hats, boots, and denim, competing in a spirited “best dressed” contest.

As I looked around that hall, I was struck by the sight of so many families who understood what it means to live with XLH. For once, we weren’t the “rare ones.” We were surrounded by people who spoke our language—parents nodding knowingly at shared challenges, children and adults who bore the same markers of our condition yet laughed with abandon.

The night closed with a campfire under the stars, voices lifting in song beneath strings of twinkling lights. It was magic.

The Rhythm of Camp Life

At CCK, the days are full and purposeful, beginning at sunrise and brimming with options. By 7:30 a.m., the grounds were alive with movement.

Families could tailor their schedules from an almost overwhelming array of activities. My boys chose bowling and the arcade to kick off their morning, while I joined other parents for a coffee meet-and-greet. There we shared our stories—some heartbreaking, some uplifting, all threaded together by the bond of XLH.

Afterwards, the camp gathered in the courtyard for the raising of the flag and a group photo. It was a ritual that fostered unity, reminding us that though we arrived as individual families, we were now part of something much larger.

And then came the food. If you’ve never been to the southern U.S., let me assure you: they know how to feed people. Breakfasts included cereal bars with countless kinds of cereal, fruit and yogurt stations, pancakes, eggs, and hearty sides. Lunches and dinners rotated through taco bars, fried chicken sandwiches, lasagna, pizza, salads, and of course, desserts and ice cream treats. Snacks and drinks were available around the clock, ensuring no camper ever went hungry. My kids really enjoyed the all you can eat toast bar.

Adventures on the Water, in the Woods, and Beyond

One of the greatest challenges each day was deciding what not to do—there were simply too many options.

• Boating on the pond was a favorite. Paddling a canoe beneath the Kentucky sun, watching dragonflies skim the water, and hearing my boys laugh as they splashed one another—it was the kind of memory that imprints itself forever.

   

• Mini golf brought out our competitive sides, while others chose to visit the barn’s Critter Club where campers were offered the chance to groom animals.

   

• For quieter moments, there was woodworking, arts and crafts, puppet shows, and so much more.

   

• For louder moments, there was a fully equipped music room.

   

• Another highlight for my boys was their snorkeling session. Getting to bring home their snorkeling equipment was just the cherry on top.

   

Every corner of the camp was designed with accessibility in mind, ensuring every child—regardless of ability—could participate fully and joyfully.

The Infamous Messy Games

Nothing could have prepared us for the chaotic delight of the Messy Games.

Each lodge dressed in their team color—ours was green—and covered themselves in paint. Together, we marched in a parade of flags, chants, and cheers, proudly announcing our presence before descending upon the main courtyard.

The games themselves were gloriously disgusting: stations of foam, slime, oatmeal dyed blue, shaving cream, and more. By the end, every camper was unrecognizable, drenched in goo and laughter. Our green lodge won “Most Messy”—a badge of honor the kids will never forget.

The grand finale? A firetruck spraying water from its towering ladder, drenching everyone in a cool, cleansing shower. Children ran screaming with delight as the Kentucky sun set behind them.

Fishing Triumphs and Quiet Joys

If you ask my boys their favorite part of camp, they’ll tell you it was fishing at the pond.

The first morning was slow; the heat had the fish hiding deep. But by the second try, luck turned. Bass began biting, and then came the moment of the trip: my eldest son hooked a giant catfish using nothing more than a hot dog as bait. The struggle to reel it in was intense, the kind of scene you’d expect in a movie. But when he finally held that fish aloft, pride radiating from his face, I knew it was a memory etched into his heart forever.

The camp staff later told him it might have been the largest catch of the summer. That single achievement carried him through the week with confidence and joy. And bragging rights. 

Connection Beyond Activities

While the children swam one evening, parents were invited to attend an educational session. This gathering provided not only information about XLH but also opportunities to connect with other adults who live the daily reality of caregiving.

One activity had us pair up, share a personal story, and then retell our partner’s story to another group. Hearing my own story echoed back through someone else’s voice was unexpectedly moving—it created a sense of validation and closeness that is difficult to replicate elsewhere.

The Final Days: Carnivals and Fireworks

As the week drew to a close, the emotions began to shift.

The Stage Night Talent Show was one of the most joyful evenings of camp, a true celebration of individuality and courage. One by one, campers of all ages stepped onto the brightly lit stage—some shyly clutching a microphone, others bursting with excitement—and shared a piece of themselves with the entire room. There were singers with voices that gave us goosebumps, dancers who spun with pure joy, comedians who had the crowd roaring with laughter.

The carnival on the final night brought everyone together for some lighthearted fun, with games, popcorn, snow cones, and prizes. Yet beneath the excitement was an undercurrent of bittersweet awareness: this incredible experience was coming to an end.

That evening, the closing campfire carried more weight. Campers and parents alike stepped forward to express gratitude, share reflections, and acknowledge the friendships forged in just a few days. Tears mingled with laughter as voices rose in song once more.

And then, as if the universe wanted to leave us with one final, unforgettable memory, fireworks lit the night sky. Bursts of color reflected in the pond, illuminating the faces of children who, for this one week, had lived without limits.

Reflections: Why XLH Camp Matters

That last night, lying in bed, I thought back to my own childhood. Growing up with XLH, I often felt isolated. My mother has XLH as well, but outside of her, I didn’t know another soul with the condition until I had my own children. Then it wasn’t until 2019—when I was invited to a small meeting by my doctor—that I finally met a few others.

Since then, the Canadian XLH Network has given me community, connection, and purpose. But this camp gave my children something I never had at their age: peers who understand them.

For them, it wasn’t just a camp. It was a place where they weren’t “different.” Where they could look around and see dozens of other kids navigating the same challenges, yet laughing, playing, and thriving. That realization is priceless. It’s life-changing.

Gratitude and Hope for the Future

I will forever be grateful to CCK, Kyowa Kirin, the XLH Network, and the Canadian XLH Network for making this experience possible. Their generosity didn’t just give us a week of fun—it gave us connection, empowerment, and lifelong memories.

My hope is that this opportunity continues year after year, opening the gates of CCK to more Canadian families who deserve to feel the same sense of belonging, joy, and renewal we felt.

Because while medical conferences and professional collaborations may advance the science of XLH, places like CCK advance the soul of our community. And in the end, both are equally vital.