Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate. Fast forward a few years to Cure JM’s first Family Conference in a post-pandemic world; with some apprehension, Catie Beth attended the conference with her family. It was at the Family Conference that Catie Beth realized that although the disease was rare, she was not fighting alone.
According to Catie Beth’s mom, Tiffany, the weekend was game-changing for her daughter, planting the seeds of friendships that would only blossom in her journey. One friendship has proven to be especially priceless. Catie Beth was able to connect with Madi Cook, who lives in the same region and is treated at the same hospital in Kansas City. The Caldwells live hours away from Kansas City but travel to get the best care for Catie Beth. Following the conference, Catie Beth and Madi stayed in touch and even made plans to visit each other during their trips.
Despite the distance, the two families haven’t let mileage limit their growth. Most recently, the two families took leading roles in hosting a milestone “Walk Strong to Cure JM” event in Kansas City, with Catie Beth and Madi leading the way for the participants walking in their honor. The walk reinforced the importance of community at its core. The two families took a “family-centered” approach to their first walk by continuing the fellowship following the walk. The families continued the celebration by hosting a group lunch and spending quality time together.
“We are all so thankful for the relationships gained there. Meeting the families and sharing experiences was not only helpful but also inspiring and encouraging. Community is essential… and therapeutic.” Tiffany Caldwell
“Being able to have the friendship and support of others battling JM and seeing them thrive has really helped me feel more confident in not letting this disease hold me back. We are stronger together and inspire each other to chase our dreams.” Madi Cook
These families remind us that we are indeed a family of families and that change is shaped at the local level. Two teens who once felt alone on the journey were able to bring their families and communities together. Through the power of community, friends become family, as is the case of Catie Beth and Madi.
