My son Ethan has an Arachnoid Cyst pressing on his brain stem. He was diagnosed at three years old but told that his cyst would never grow. We were told to have an MRI at age 8. We went to a different doctor this time and found out his cyst had grown by 30 percent. Two weeks later, my son was having brain surgery due to the symptoms he was experiencing. After surgery, a couple months later, we found out that my son’s cyst had almost grown back to the same size it was previously.
Right now Ethan’s Arachnoid Cyst is stable. I started a foundation due to the frustration and lack of research and information to help him and kids like him. As parents we felt very lonely in this process and we don’t want anyone else to experience this loneliness. We are working towards adding neurosurgeons to our Medical Advisory Board right now. This foundation is called Pediatric Arachnoid Cyst Foundation and can be found on Facebook, the web, and twitter.
During this entire process, Ethan has been strong beyond words. Yes he has been scared and anxious, but he has had to endure things that most adults wouldn’t have had to endure. Watching your child not accept pain medicine in the hospital, so he can go home faster is mind boggling. During this process everyone nicknamed him “Ethan Strong” because that is what his name means.
Ethan is my hero.