Rylan started having seizures on November 14, 2004. His condition is known as Myoclonic Astatic Epilepsy. He has not gone a day without a seizure since. At times he would have up to 250 seizures a day. Rylan and his family had to travel to Calgary numerous times for medical appointments where he has been hospitalized for long periods of time. Rylan doesn’t speak so communication is very difficult.
Rylan’s mom Jacqui has shared this update on how Rylan is doing today:
Rylan turned 7 in August! Hard to believe that my little guy is growing up so fast...also hard to believe that on November 14, 2009, it will be five years since the seizures started. Rylan played baseball in the Challenger League again this year and this fall he started his 5th year of school. He now goes to a special school as the program is better suited to his needs.
Over the years we have had so many wonderful people come into our lives, many of them because of Rylan's condition. It really made me appreciate just how many people are involved in his care directly and indirectly and how many of them that we now count as friends.
I guess one of the things that is always on my mind is that really not much has changed this past year as far as his condition, goes. This is good in that for the most part there is some stability, if you can call 30 to 40 seizures per day stability. Sad, because it also means that there hasn’t been a medication or treatment found that works to control his seizures. I worry for his future, wonder when or if he will ever talk again, pray that seizures don't get any worse and hope for it all to end one day.
Thank you for taking the time to read about Rylan, and thank you for supporting the Children's Hospital Foundation, it means a lot to Rylan and me.