Tell us about your son’s journey with epilepsy:
My son, Griffin, has focal epilepsy with complex-partial seizures. He had his first seizure, that we know of, when he was seven years old. In hindsight, we believe that he was having more seizures beforehand, but we didn’t recognize them because they were not the grand mal type. When he was nine years old, the seizures began occurring more often and over the next few years, medication after medication failed.
Eventually, Griffin was diagnosed with refractory epilepsy. We went to visit a specialist in the Twin Cities and were referred to Mayo Clinic. Currently, Griffin is scheduled for brain surgery to remove an area in his left temporal lobe with hope that it may help control or even alleviate his seizures. We are very hopeful and optimistic!
Tell us about Griffin’s experience with Camp Oz:
Griffin has been attending Camp Oz for the past two summers. After his first summer, he became “addicted” to camp. He often asks me in the fall, “Mom, how long until Camp Oz?” His favorite part about Camp Oz is having the opportunity to meet other kids with seizures. He finds joy in the fact that he and his peers “feel” the same way – they understand each other. Between playing games, making new friends, and interacting with the camp counselors, there is never a dull moment during the week-long overnight camp.
As a parent of a child with epilepsy, tell us your thoughts on EFMN’s Camp Oz program:
In June of 2015, we dropped Griffin off for his first time ever at Camp Oz. It was 4 ½ hours away from our home in North Dakota. He had never been away from us, except for a night or two at his grandparents’ house. Initially, I was scared to leave him there and I cried when it was time to go. But on the way home, I realized that he would be safe. In fact, in a camp filled with nurses and a pediatric neurologist, he was probably safer at Camp Oz than he was in his own home! At that moment, I let my guard down and counted off the days until we returned to pick him up. Although I missed him so much, I was relieved to learn that he absolutely loved his time at camp! When we picked him up that day, I really realized what a huge impact Camp Oz makes on these kids. They get to see that they are not alone in this fight!
How did you initially get connected with EFMN?
Our pediatric neurologist introduced us to the Epilepsy Foundation of Minnesota. After receiving a pamphlet from the clinic, I checked out EFMN’s website and after I signed Griffin up for the Shining Stars Program, we learned about Camp Oz.
There is an EFMN staff member located in the Fargo-Moorhead area, and we try to be involved with as many local events as possible. In the past, we have attended parent support groups, the annual picnic, the Rise Above Seizures Walk, a Fargo-Moorhead Redhawks baseball game, and of course, Camp Oz.
What do you wish to share with other parents with children with epilepsy?
The Epilepsy Foundation of Minnesota is such an incredible gift to families with loved ones with epilepsy. I encourage everyone to go online to learn how they can get involved, too!