Reflecting on Our 2023 Quality of Life Family Camp by Rebecca Whitney

SRNA Family Camp came together at Morgan’s Wonderland Camp (MWC) in early July 2023. A departure from time and place, it was met with trepidation yet curiosity and optimism for a familiar experience in a new and exciting environment. Families, volunteers, community, and medical professionals gathered for a week of engaging, learning, and awesome activities! After two years without gathering and another year of low numbers impacted by pandemic protocols, gathering safely and in a way we haven’t for such a long time felt surreal. We welcomed international families, children of all ages, new and returning campers, as well as former Transverse Myelitis Association family camp attendees – now adults – bringing their experience, life lessons, and empathy that only those who live the impacts of rare neuroimmune disorders day in and day out can share with a child or family.

Our first night at camp started with a bonfire that allowed families to decompress from travels and slowly integrate into their cabins and with one another. It was the perfect kick-off after a busy day of travel for many and to begin the rest of the week’s activities and sessions. This year’s camp also offered new experiences and activities that were awesome and exciting, and fully accessible. A zipline, a giant swing, a challenge course, and a giant climbing wall were a few options that many in our community may not have been able to participate in before attending camp at Morgan’s. The new activities challenged everyone to step out of their comfort zone and face challenges with bravery, feel included, and do so safely. The camp offered an indoor carnival, access to adaptive sports in a beautiful gymnasium, arts and crafts, and many games and activities suitable for the outdoors or taking a break from the summer sun in the gym.

After record heat in Texas just a couple of weeks before, we took extra care to ensure everyone could stay cool and enjoy all the activities available with a strategically planned schedule, sufficient hydration, rest time, and air-conditioned opportunities. We were thrilled that the heat was similar to previous years and didn’t stop anyone from having a fantastic time! The pool, lazy river, and splash pad were highlights, providing a respite from the heat and a way to enjoy one another’s company in a traditional summer setting.

Our week at Morgan’s convened over the Fourth of July holiday, and in proper summertime form, we held a pool party, complete with music, snow cones, and a surprise firework celebration at dusk; it was a perfect celebratory moment for the holiday and for our families to be together once again! 

The most fantastic evening was our final night together with a talent show, which has become a tradition. After nearly a decade of family camps and as many talent shows, my heart wasn’t prepared for the plethora of emotions, pride, and joy this year’s talent show put us through. Our families, our children, and the MWC staff are so incredibly adorable, talented, humorous, and thoughtful, and we can’t wait to bring it back again – this year’s talent show truly set the bar! There wasn’t an attendee who didn’t laugh and cry at the talent show, and I’m so excited about the possibility of bringing one of our incredibly talented campers back to teach the art of dance to our children. This year’s talent show has cemented a spot as a core and treasured memory for me as an SRNA team member, as a parent of a child living with one of the disorders, and as a future healthcare professional.

SRNA Family Camp is a tremendous amount of work to organize and implement. It’s simultaneously exhausting and life-giving, rewarding, and depleting. But the week’s impact defies conventional measures and is felt for days, weeks, months, and even years after our week together at camp has ended. A testament to this is community volunteers who’ve experienced camp as a child who have come back as adults to offer their time, experience, and hearts to our current young families. Camp is a part of my heart and being and encapsulates who and why I do this work. It is an experience that I hope every family living with a rare neuroimmune disorder has an opportunity to experience: to connect, to feel included, and to belong, taking comfort that although life with a rare neuroimmune disorder is often complicated, complex, and taxing, it is also beautiful and worth the living. We are so grateful for the opportunity to gather, learn, grow, and belong to a community of beautiful, resilient children, families, dedicated clinicians, and community volunteers who share a heart and passion for quality of life for children and families living with rare neuroimmune disorders.

And a hint… if you want to get in on the action, connection, excitement, and one of the most amazing experiences, we’ll be heading back to Morgan’s Wonderland Camp in 2024! Mark your calendars for June 30 – July 4, 2024 – more details, including applications, and eligibility for families and volunteers, will follow in late November, with applications opening in December!