The shining star of 2023 for many families in the TBRS Community was the TBRS Summit, held at Morgan’s Wonderland Camp in San Antonio, Texas. Participants echoed the same underlying feeling over and over: the familiarity of shared experience is something we, as families with a rare disease, rarely get. As caregivers, we might have logically anticipated an immediate bond when coming together, but witnessing and experiencing such a concentrated gathering of our community truly leaves one breathless. “No words can describe what it felt like to be surrounded by people who get it” (Katie Brennan) and “…just being able to relax, feel accepted and laugh, cry with others is absolutely a life-changing experience.” (CathyMcClenahen)
Additionally, watching your child flourish in such a unique environment brings a whole different level to the impact. Erin Rooker stated, “Seeing my child surrounded by people who understand and act just like her was special. She was so comfortable and at home – like we were with family.” And family is a perfect word to describe both that weekend and the care that is shown throughout the year at various events.
Part of that feeling of family is the visual and personal familiarity many diagnosed individuals have. Jane Miller Hatton’s family found that at the conference. “The highlight for Ashley was meeting a new friend… They literally could be sisters. Ashley enjoyed her so very much.” Others have expressed a similar long-lasting connection. “Josh felt so loved, accepted, and appreciates all the new friends he makes every time.”(Cathy McClenahen)
“We felt very accepted, and that is rare,” states Vicken Totten. The difficulty of pure acceptance is something many families face on a regular occurrence. This opportunity for the TBRS Community’s acceptance is not isolated. Throughout the year in social events, support groups, and our community Facebook page we come together from across the globe and create a safe space to find friendship. Zoe Wisnoski recalled a social zoom that occurred this past summer, “As I sat with my son to help him interact with the group and the trivia, his face was glowing. He communicated few words, but that hour will stay with me.”
While the creation of family may have stood out during the Summit, the magnitude of research was a close second. Katie Brennan stated, “We went eager to meet people who could relate to us and we could learn from. The doctors, geneticists, TBRS staff, volunteers, and information knocked it out of the park.” Even participants who went to previous conferences, like Cathy McClenahen, were blown away: “We are truly amazed after returning from every conference at how much research has been done and is still progressing!”
As we all know, 2023 was filled with more than just the Summit weekend. And families reflected on those daily moments. Sixta Garcia outlines a memory – so familiar for many families – that will stick with her moving forward: “During an outing to our local children’s museum [my son] was insistent that he could cross the rope bridge, and to my amazement, he was able to cross it entirely on his own…Before this day I had no idea what he could really accomplish or if he’d be able to do this without my help, and he was able to prove me wrong. It’s a perfect example of all the accomplishments that our loved ones who are diagnosed with TBRS can achieve with just a little perseverance and encouragement.”
Having the TBRS Community present on not just magical moments like the Summit, but every-day moments shared online, creates a space for victories to be celebrated in the way they should be, by people who understand what an enormous accomplishment each small step is. I am thankful that 2023 flourished in this fellowship, and I can’t wait to see how much farther our community will grow in 2024.
