SRNA Brings Hope

By Jessica Schwartz

My daughter, Ivy, and I were thrilled when we found out that we would be attending the Siegel Rare Neuroimmune Association’s (SRNA) Quality of Life Family Camp. This was our first year attending, and we were both so excited to meet families like ours. We started out our “girls trip” early in Nashville, TN before heading to camp. We had a lot of fun being tourists.

I have tried but haven’t been able to find the words to describe our experience at the Center for Courageous Kids (CCK). The staff and volunteers with CCK and SRNA are the reason this camp is so memorable. They made sure all of the families had what they needed and were always willing to lend a helping hand to make it easy for us to do all the activities. I’m used to having to leave activities early so I can tend to Ivy’s medical needs, but the counselors handled all of that, so I didn’t have to worry. We got to meet so many families and children that battle with the same issues as we do. I often feel alone but have found many parents that I can now lean on for support and guidance. They had education sessions for the parents so that we could talk with specialists and share our concerns and help guide us in the right direction of care.

Watching my daughter and the other children encourage and support each other was heart-warming. Ivy got to try new activities that we don’t get to do at home. She loved fishing and boating, and when she got too hot, we would find ourselves inside doing crafts or learning to cook something new. We had a blast during the family Messy Games. Ivy stepped out of her shell and participated in the talent show with some of her favorite counselors. Transverse myelitis comes with a list of hardships and difficulties, but it doesn’t compare to the amazing people that we have met during this journey. Ivy is my TM warrior, and she’s already making travel plans to visit her new friends that she met at camp!