The following summer I attended the Transverse Myelitis Association’s Quality of Life Family Camp. I learned a great deal about TM from the other professionals who were there to educate families, and from the parents and children themselves. I met Sandy and Pauline from the association and felt their incredible passion to find answers.
I was hooked. Since then I’ve attended every camp except one, each year learning more and more, especially from the children themselves. Camp is an enlightening experience. Because the camp is fully accessible, I can see my patients being kids. That means being silly, hanging out, playing in the gym, horseback riding and even going fishing. My favorite camp activity is always swimming with the kids and families. Kids that have difficulty moving against gravity on land have much more freedom to move in the pool when they don’t have to fight against gravity. I like to spend some time helping kids’ float and move around, but my favorite part is the time spent playing a spirited game of water volleyball. Because of the buoyancy, some of the kids are even able to stand and play independently in the water. For the kids who can’t stand, parents carry their children on their backs or shoulders, while others hold their kids in their arms and hoist them up when the ball comes close. The dedication and strength that parents show to help their kids fully participate inspires me deeply. It’s an honor to now be a part of the educational team for the camp.
As my knowledge grew through the years, so have the numbers of children with TM in my care at Kennedy Krieger, and the numbers of adults treated by my colleagues. Today, our entire team of physicians, nurses and therapists has expertise in rehabilitation for SCI caused by TM. This deep expertise is no doubt in part due to how much our patients have inspired us through their unwavering hope and unwillingness to give up.