Maryland, United States

In 2005, my husband’s new job brought me to Baltimore, Maryland. As a pediatric nurse practitioner, I began my own search for a job where I could continue working with children with disabilities as I had been for the past 25 years. I soon landed at the Kennedy Krieger Institute in their newly established International Center for Spinal Cord Injury (ICSCI). My first year there was a busy one as we all worked hard developing a new program of intensive, activity-based restorative therapy for the children and adults with spinal cord injury (SCI) traveling to us from across the country and the world. At the time, I knew very little about transverse myelitis (TM) as a cause of SCI, but that was about to change.

My first patient with TM was a teenager from California. In an instant, TM had stolen her ability to both walk and breathe. While she benefited from our intensive therapy, the difficulty of facing an illness about which we know so little stayed with me. No one could offer that young woman any explanations; there was no vehicle or diving accident to blame for her paralysis. She was my inspiration to learn more.

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.

Our patients with TM embody the International Center for Spinal Cord Injury’s slogan: Hope Through Motion. We value this slogan because we believe HOPE fosters SUCCESS. Science has given us many answers since I met the young patient from California ten years ago. We know that activity and motion are the best treatments for spinal cord injury. Just like people with diabetes are treated with insulin and people with hypertension are treated with medications, people with spinal cord injury can be treated with activity and motion.

Intensive activity-based restorative therapy that focuses on activating the nervous system both above and below the level of injury can help restore function, not just compensate for lost function.  Activity-based therapy has a strong emphasis on functional electrical stimulation, task specific practice, weight bearing and standing, locomotor training and walking, as well as aquatic therapy. This type of therapy is particularly important for children because their nervous system is still developing. Children can often defy expectations for recovery, doing better than what would be expected and continue to improve for many years after the injury.

There are many secondary consequences of spinal cord injuries from all causes that can interfere with health and quality of life. Management of these consequences is critical so that individuals can remain as healthy as possible and ensure they will be able to take advantage of any new treatments that may be discovered during their life time. We hope for those discoveries right alongside our patients, and we’re all cheering on the scientists at Kennedy Krieger and similar institutions around the world who are working to find the answers we need.

Janet Dean, MS, RN, CRRN, CRNP