Our experience at SRNA Family Camp at CCK

Everyone in our family had been looking forward to SRNA Family Camp ever since we found out our application had been accepted. Excitement grew as the days to camp got closer and we visited the website for the Center For Courageous Kids where the camp is held. We saw so many activities, pictures and videos that said SRNA Family Camp was going to be awesome, so I wasn’t prepared for my very first reaction as we drove into the camp facility – I couldn’t stop crying!

The days spent in the hospital, the nights I slept on that pull out bed and the many times I had to calm my daughter down when a nurse walked into the room and terror-filled Greta’s eyes at what might be coming next; all those experiences came back and I cried. I found that SRNA Family Camp at CCK was the perfect place to leave those tears.

Greta loves people. Meeting new friends is one of her greatest joys and to know some of these friends had a rare demyelinating disease just like she did made her feel like she wasn’t all alone. Our two boys saw how the families there interacted with life when one member of the family is impacted. The boys also had the opportunity to attend a special feedback session with Dr. Lana Harder, Neuropsychologist at UTSW, to talk about what it was like having a sibling who had been through so much.

CCK is the perfect place to hold SRNA Family Camp. My husband and I learned early on that nothing there is done without a purpose. We saw Greta respond well to the audio cues in the cafeteria and flourish with the counselors who had taken the time to get to know her on our first day there. From Messy Games, Archery, Swimming and the BG 500 to Woodshop, Horseback Riding, Music Room, Arts and Crafts and the Beauty Shop, there was always fun to be had.

SRNA is gracious enough to include other rare demyelinating diseases besides Transverse Myelitis in their Family Camp. We are grateful to have met other families with an ADEM child (Acute Disseminated Encephalomyelitis). Sharing stories and trading ideas can be done long-distance, through email, phone calls and even handwritten letters, but we discovered it made such a bigger impact in person. Everyone there was instantly your family, as we are bonded by going through this journey with our children. The ability to share and help one another was present from the very first moment.

SRNA brought together a great team of doctors, nurses, therapists, experts and special guests that shared so much information with us. The parent education sessions were so helpful in that not only were we hearing topics and information from the experts, but we were also getting feedback from our fellow parents at the same time.

One of Greta’s greatest struggles has been her fine motor skills. We saw her come alive in the woodshop at CCK. She couldn’t do enough woodworking projects, as she didn’t feel the usual disappointment in herself when she can’t do things as neat and perfectly as everyone else does. It was something we might never have thought of in helping her, but thanks to SRNA Family Camp, now we know one more area to incorporate into Greta’s recovery and healing. SRNA Family Camp is something our family will never forget and something for which we will always be grateful.

~ Sharon Leukert