My Perspective as a Camper on SRNA’s Quality of Life Family Camp by Ireland Thomas
When I was six years old, I had my first attack of Neuromyelitis Optica Spectrum Disorder (NMOSD), which made it painful to stand for long periods due to the fiery neuropathy that crawled its way up my legs. At age eight, when I went blind in my right eye, I received my diagnosis. Although I had a family that supported me, a mom and a dad and a seemingly endless extended family of aunts and uncles and grandparents, I desperately wanted one thing: a friend.
I wanted someone who was like me, someone who was around my age, to care about what I went through. To see me. But the pain, both physical and mental, of having such an odd diagnosis made this desire for connection near impossible. Other kids who were “normal” treated me poorly because of my illness, which isolated me further from my peers. I once asked a girl who was my friend before I got sick if she could slow down during recess, and not run because I was in so much pain. She told me “that’s why I’m running, so you can’t keep up.” This idea, that someone who was once my friend did see and understand my disability, but chose to weaponize that against me was just one more thing, and I could barely manage how many things had been thrown at me.
I became very depressed, which is a devastating thing to see in the eyes of an eight year old. While other children were active and playing outside, I’d beg to be allowed to stay inside for recess or I’d sit by myself and wait for the whistle to ring. My attacks were the worst days of my life physically, but the days I so wanted a friend were the worst days of my life mentally.
My parents, who love me, were so worried. They didn’t know what to do. But when I was 11, my mother was researching my condition online. Since I had extensive spinal cord lesions, my mother looked up “Transverse Myelitis” and discovered the Transverse Myelitis Association (TMA), which is the name the Siegel Rare Neuroimmune Association used to go by. TMA had just announced that year’s Camp for Courageous Kids, for kids with transverse myelitis (TM). She emailed TMA, hoping they’d allow me to join despite me having NMOSD and not TM, and they did.
This was a huge blessing, and one of the primary points I can identify where my life turned around. First, when I went to camp at age 11, I got to meet so many other kids who, like me, had experienced so much more than a child ever ought to. These kids were empathetic–I didn’t have to explain myself to them, why I was bloated from steroids, why I had to sit more often. I didn’t feel nearly as alone when I was in proximity to these kids. In addition, TMA invited doctors who would run information sessions for the parents–and one of the doctors suggested that I try a certain medication for my intense pain and spasms. After trying that medication, I still had some pain, but not nearly to the extent that I’d felt every day since I had spinal cord attacks. If TMA hadn’t chosen to invite doctors, we would never have made that connection. If TMA hadn’t held camp, I would still be stuck in that intense isolation and the mindset that no other 11 year old understood what I was going through. In a way, I can say that TMA, now SRNA, saved my life.
As someone who’s been in the children’s wing of the hospital far longer than the adult’s, I have always had a broken heart for our community’s children. Whether a child is a patient themselves, the sibling of a patient, or the child of one, they have been impacted by rare disease. These kids have grown up too quickly. I cry when I think about it too long. When I was 11, all I wanted was to find anyone who was like me, who was sick like me. At 21, I can’t bear to think that there are any more children who were like me.
I spoke with my friend, Lindsey Cunningham, who was one of many amazing other kids I met during summer camps hosted by SRNA. She has Acute Flaccid Myelitis, and she told me that during the summer camp, when we were all together, and for once she didn’t have to explain why one of her arms looked the way it did—that was the one time she’d wear tank tops. That was the one time she didn’t have to explain her disability to other people—the one time she felt as understood and connected as I did.
Please consider attending camp if you have a child impacted by rare disease. I cannot recommend it enough. SRNA has created a safe place for those of us who’ve been through some of the worst experiences can gather together to commiserate about shared experiences, celebrate victories, and spend time with others who fully understand. SRNA is a family for us all.
