My name is Angela and my son, Stryder, has been fighting epilepsy for several years. He is five now and his seizures are not controlled. Stryder’ epilepsy has affected every area of his life and yet he is always smiling.

Stryder has been the Rochester Ronald McDonald Ambassador for their season of giving in 2011 because of the fight in him and they told us he raised more money than any other in previous years. Even when Stryder was not able to talk (nearly 4 years old), he had a smile on his face. You can see this video showing where he was just a little over a year ago: http://www.youtube.com/watch?v=CXQv4RexKGk – he has been in the local news in several types of media and they did a local Tip a Cop benefit to help raise awareness and funds for a seizure scenting dog. There is something about him that people respond to; he is a sweet natured little boy struggling with epilepsy and its effects.

Stryder has a connective tissue disorder that makes him very hypermobile and often in pain and unable to walk long distances. Stryder was also diagnosed with epilepsy when he was three at the Mayo clinic in Rochester (it is believed that he had seizures since he was an infant) and just last month he was diagnosed with a rare form of epilepsy called Landau-Kleffner Syndrome, only a few hundred people worldwide are diagnosed with this.

Landua-Kleffner Syndrome (LKS) is a form of epilepsy where the child has constant silent seizures, or spikes, while they are sleeping; Stryder was having one or two seizures every second while asleep if not controlled. LKS causes them to lose language skills and they often relapse many times in their life (often every three months), causing permanent brain damage. In Stryder’s case, he was not able to talk until he was almost four and it will cause more delays with his speech and language as he gets older; he may lose everything he has gained if the seizures are not caught in time. Because the seizures are silent, he will have to endure overnight EEG’s often to check for spiking and medications work only for short periods of time. Currently, the spike waves are controlled but breakthrough seizures are an almost every night occurrence.

Adapting to his illness provides unique challenges to Stryder’s family because he has different kinds of seizures, some big and some small and the ones presented by Landau-Kleffner Syndrome are silent and “invisible”. Some of his seizures can be so subtle that even a trained observer has difficulty recognizing them. During these seizures, Stryder loses consciousness and is unable to move or speak but may only appear to be daydreaming. This means that every day activities such as climbing, going down a slide, bathing, swimming, or even eating can become dangerous as a seizure can cause him to fall, become immobilized in water, or choke on food. Stryder is unable to sleep alone for fear of having a seizure, but a seizure dog will help notify Stryder’s parents when he is having seizure so they can change his medications and prevent as much brain damage as possible while also protecting him from hurting himself.

While Stryder has grown both emotionally and developmentally, the challenges associated with LKS and EDS are still ever present in his life. In his daily life, he often dislocates different joints; even walking through a parking lot is difficult and painful at times. Stryder also has many other types of seizures and the risks of his spikes relapsing are an everyday fear. You can read his full story and see pictures on his site: www.strydersstory.com