On September 1st, 2011, Kyler had his first major seizure that brought our family face to face with Epilepsy. He woke from sleep yelling and we assumed he was just having a bad dream. A few minutes passed and he came out of his room very emotional and out of sorts. He was staring into the distance looking towards us but not quite at us. Kyler was very fearful voicing his concerns but not making any sense. We were scared. He then tried walking back to bed and started stumbling in circles. We rushed to his aid and called 911. It was at this time that he started to become very incoherent coming in and out of consciousness. His breathing was very shallow and it felt like we were losing him. Kyler then went into a full catatonic state with his eyes wide open and was staring at the ceiling. We were hysterical waiting for the ambulance. His seizure lasted for nearly 45 minutes but honestly it felt like an eternity.
The Epilepsy Foundation of Connecticut has been a great resource for our family, one that we relied on heavily. They were there when we had all the questions in the world and also when we needed action from them. They helped us partner with the Danny Did Foundation and their Emfit Monitor. Kyler fortunately was one of the few to be awarded with this life saving Epilepsy safety device. It has helped us get what sleep we could during that stressful time.
The Foundation was also there when we fought our local school system for the proper care provided for a child combating Epilepsy. They advocated for us because they were one of the few that understood with what we were dealing. They helped us find the right school and helped outline the proper care for Kyler. Their participation also brought education that was more current to the teachers and medical staff in the district. All parents current and future will benefit from this.
Kyler is now on the road to coping and overcoming his battle with Epilepsy. Kyler is stable on his medication and is for the first time in long time able to focus on growing up like a normal child. We can’t thank enough the Epilepsy community and the great doctors at CCMC for all their help and support.