Noah, United States, 7 years old 

What participation means to Noah’s family:
“I think it’s good for their mental health to get them involved if you can. It takes a lot of extra eyes and some adaptations but worth it in our experience with FOP. ” 

Seven-year-old Noah enjoys a wide range of activities from baseball and fishing to swimming, biking, golf, and neighborhood games. Diagnosed with FOP in 2024, Noah has limited mobility in his arms, neck, hips, and back, but that has not stopped him from exploring new opportunities. 

His family focuses on making thoughtful adaptations that allow him to participate safely. Swim instructors modified lessons to accommodate his range of motion, while neighborhood friends have learned how to play safely alongside him. For example, when playing wiffle ball and kickball, his friends know not to throw the ball too hard at him, and typically, he plays in the outfield to avoid line drives. 

This year, Noah also joined Rookie League baseball, where coaches and parents worked together to support his participation. For his safety, he usually warms up with a coach, and they avoid fly balls to reduce the risk of him getting hit by a ball. Noah carries the gear himself in a rolling bat bag and wears turf cleats, which are more comfortable and don’t have spikes like regular cleats. 

Before the baseball season began, Noah’s mom sent out a note to share about FOP and help create understanding. View her note HERE

Artem, Russia, 14 years old 

What participation means to Artem’s family:
“Sometimes a new activity appears in the most unexpected way and turns out to be possible after all.” 

At 14 years old, Artem lives with significant mobility limitations, including restricted movement in his neck, spine, and shoulders. Like many parents of children with FOP, his family initially viewed sports as something that might not be possible. 

Then came swimming. 

For the past several years, swimming has helped Artem build confidence and independence in the water. While he cannot perform traditional strokes, the skills he learned have translated into real-world confidence and safety. Once during a vacation at the sea, a wave knocked him over in shallow water. Artem managed to orient himself, stand up, and get out of the water on his own without help. “For us, that was a powerful moment. We realized that the skills he learned in the pool really work in real life.”

An even bigger surprise came during a family vacation, when Artem discovered table tennis. With limited arm mobility, he developed his own style of play, relying on strategy and placement rather than traditional technique. What began as a vacation pastime has become a weekly activity shared with family, neighbors, and a coach who understands his limitations and adapts exercises. 

“For us, table tennis became something more than just a game. It is time together, a shared interest, and sometimes even a bit of team competition when we play doubles against others. Moments like these remind us that even with FOP, life can still be full of new experiences, laughter, and small victories we never expected.”

Karem, Turkey, 5 Years old 

What participation means to Karem’s family
“While my son’s body may become limited, I cannot limit his wishes.” 

Recently diagnosed with FOP, five-year-old Karem enjoys swimming and other low-risk physical activities. His family believes in helping him understand his own body while supporting his interests whenever possible. “He wants to do them [activities] himself. We mostly make decisions by trusting him, because he is a very aware child.” 

Rather than focusing exclusively on restrictions, they focus on open conversations about safety. Together, they discuss potential risks and make decisions that balance caution with opportunity. 

For Karem’s family, recreation is about more than staying active. “I believe that with careful control, he can do many activities. I do not want him to feel deprived of anything. I want him to experience all emotions and moments of life.”

“If there is something he cannot do, then I will be his hands, his arms, his waist, and his legs. I will hold him close to me and still let him feel the experience he wants. That is why I believe the key is not being afraid of this disease, but accepting it. This is how I live with it. This is how we live with it.”

Quinton, United States, 8 years old 

What participation means to Quinton’s family:
“I’m always looking for activities that keep Quinton active, engaged, and included.” 

Quinton was diagnosed with FOP as an infant and has explored a variety of activities over the years, including swimming lessons, piano classes, and Cub Scouts. 

Today, one of his favorite activities is therapeutic horseback riding. Each week, he spends time riding and caring for a horse named Cashew. His family first learned about the program through a volunteer opportunity and quickly recognized both the physical and emotional benefits. 

“The caring staff at the facility truly impressed us with their understanding of Quinton's condition, giving us peace of mind. Since starting the riding program, we've noticed positive changes in Quinton's gait and posture, and he absolutely loves the time spent with the staff and Cashew.” 

Raina, United States, 14 years old 

What participation has meant to Raina’s family:
“Activities have been crucial for our child’s mental health and sense of belonging.”

Raina’s schedule is full of activities much like a typical 14-year-old’s. From theater and choir to student council, speech, music lessons, and youth group, she remains actively engaged in her school and community life. 

Diagnosed at 4, Raina’s family has intentionally steered her toward activities with lower injury risks and less movement and away from sports. Through accommodations such as strategic placement during performances and clear communication about FOP, activities that once seemed too dangerous became manageable. 

“When working with leaders, we have described it as an "allergy" to injury and emphasized the importance of limiting dangerous physical interactions.”

The benefits have extended far beyond the activities themselves. Through these experiences, Raina has developed friendships, leadership skills, and a strong sense of identity. 

“Activities have been absolutely crucial for our child's mental health and sense of belonging. They have allowed her to feel more like the other children and like she can do the things that everyone does.” 

“I would encourage other parents to discuss the decision to participate in any activity thoroughly with the child and any parental figures. Make sure to include the mental health of the child in your discussion. Allow room for forgiveness if something unfortunate happens during an activity (no blame on decision makers).”

Aisyah, Malaysia, 19 years old 

What participation means to Aisyah’s family:
“Activities are essential not just for physical engagement, but for confidence, identity, and social connection.”

Nineteen-year-old Aisyah participates in a wide variety of activities, including virtual running, strategy games, and fashion shows.  

Aisyah’s virtual running events, where she has completed distances of 5 km and 8 km, can be done at a comfortable pace on safe terrain without pressure. She also enjoys playing e-games, especially Mobile Legends: Bang Bang, which highlights her interest in strategy-based and competitive gaming. 

“When working with coaches or program staff, we provide a short written summary or letter explaining FOP and safety plan with dos and don’ts. Open communication between parents and coaches and program staff, as well as a willingness to adapt activities, has helped us be successful in keeping Aisyah active and involved. We check in regularly with both Aisyah and the program staff.” 

Through recreation and community involvement, Aisyah has developed confidence, achieved personal goals, expressed her creativity, and built connections with others. 

Aisyah’s experiences demonstrate that participation can take many forms, and that recreation can be just as valuable for emotional wellbeing and self-expression as it is for physical activity.

What participation has meant to AJ’s family:
“Through sled hockey, adaptive golf, and fitness training, AJ continues to prove that living with FOP does not mean giving up on dreams, goals, or new experiences. Most importantly, they have shown him that while FOP is part of his story, it is not the whole story.”

For AJ, participation has always been about focusing on what is possible.

Living with FOP means navigating limitations and weighing risks in ways most people never have to consider. But through adaptive sports and fitness, AJ has found opportunities to challenge himself, build confidence, and experience the joy of being part of something bigger than himself.

Sled hockey has become much more than a sport. On the ice, AJ is not defined by his diagnosis. He is a teammate, a competitor, and an athlete. The sport has provided him with friendships, confidence, independence, and a strong sense of belonging. It has also given him opportunities to push himself physically in an environment designed to support adaptive athletes.

“As parents, watching AJ play sled hockey has been incredibly meaningful. We have seen him develop resilience, leadership, and self-confidence.”

The experiences gained through sled hockey have extended far beyond the rink. Through competition and teamwork, AJ has learned valuable lessons about perseverance and confidence while experiencing moments every child deserves; the excitement of competition, the pride of accomplishment, and the joy of being part of a team.

Adaptive golf has also become an important part of AJ’s journey. While sled hockey offers teamwork and competition, golf creates something different, a meaningful one-on-one time with his dad, Rico. Together, they have built a special bond through shared experiences on the golf course, creating memories that will last a lifetime.

Golf has taught AJ patience, focus, and perseverance, qualities he has strengthened throughout life with FOP. The sport also offers something especially meaningful: an activity that can continue to evolve with him over time, adapting as needed while still allowing him to stay active and engaged. For Rico, time on the golf course has become about much more than the game itself. It is about celebrating accomplishments, encouraging independence, and showing AJ that there are always ways to stay involved, despite the challenges FOP can bring.

More recently, AJ has also embraced fitness training at the gym. With FOP, every activity requires careful balance. The goal is never to push too hard or risk injury, but instead to focus on safe, intentional movement and gradual progress. The gym has become another place where AJ can build confidence and take ownership of his health. Every workout represents progress, with an emphasis on consistency, listening to his body, and celebrating effort over perfection.

For AJ’s family, those small victories matter deeply.

“We have watched AJ gain confidence as he becomes stronger and more comfortable with what his body can do.”

Isla, United Kingdom, 12 years old

What participation has meant to Isla’s family:
“Participation just looks different.”

For Isla’s family, participation has always been about finding ways to say yes, even when things look different. Now 12 years old, Isla lives with significant physical challenges. She has lost almost all upper body mobility, has severe scoliosis, can walk only short distances, and her growth has been affected. But as her family emphasizes, she is so much more than her condition.

“When your child has FOP, you learn very quickly that the world is not designed with them in mind.”

Every activity involves careful thought and planning. Everyday experiences that many families take for granted often require weighing risks and rewards. Rather than avoiding experiences altogether, Isla’s family focused on adaptation and creativity. While riding a bike was not possible, an adapted trike with assistance allowed Isla to participate. Swimming presented challenges too, but a neck float gave her independence in the water. Today, Isla continues weekly hydrotherapy, which supports both her physical fitness and respiratory health.

“We took the attitude that we'd try and let Isla do all the things she wanted but they may just look a bit different or need a bit of creativity.”

Sometimes participation means adapting the role rather than the activity itself. At school sports day, Isla may be the photographer instead of competing. Other times, participation comes through environments intentionally built around inclusion.

For more than eight years, Isla participated in a local Riding for the Disabled group — an experience that brought freedom, joy, and confidence in ways traditional sports could not.

“Our experience with Riding for the Disabled is a perfect example of what’s possible when people truly understand inclusion. They didn’t focus on what Isla couldn’t do — they focused on what she could do.”

Creative and social activities have also played an important role. Calm, structured, and supported experiences tend to work best, and music therapy has become something Isla deeply enjoys.

“Activities aren’t just about what you’re doing — they’re about who you’re with, how you feel, and whether you belong.”

Safety remains part of every decision. Isla’s family avoids chaotic or crowded environments where accidental bumps are more likely and plans carefully for participation. But they have also learned the importance of balancing protection with quality of life.

Over time, Isla has developed an understanding of her own limits and learned to recognize when something doesn’t feel right,  an important part of staying safe while continuing to participate.