Owen's Story

It's very important to us that everyone who's working so hard to help our little boy be knowledgeable about his journey. We'll try the shortened version; let's see if it turns out that way.
Owen seemed perfectly healthy when he was born--no complications during pregnancy or the first few months of life. It wasn't until he was 6 months old that he began having spells that consisted of his eyes rolling back. Thus began the long road of MRIs, EEGs, and CT scans. These spells soon went away temporarily, but left Owen developmentally delayed. Owen turned 2 and these spells returned but were noticeably different and occurred more frequently. Owen was soon after diagnosed with chronic infantile epilepsy and we were still left with the question of what caused all of this to happen to our little boy. We went through extensive genetic testing and found nothing. We have tried multiple medications along with an extremely strict (disgusting I might add) ketogenic diet to attempt to control his seizures, but so far have been unsuccessful. Which brings us to the present. This winter has been tough on Owen. He has been hospitalized for pneumonia and for dehydration due to having the flu. He was completely over-medicated for over a month and spent his days sleeping; he ate just enough to get his medication down, then would sleep again. After a 3 day stint at Children's Mercy, they took him off of 3 out of the 4 of his medications, and he's a completely new little man. After not smiling or making eye contact for over a month, not being able to sit up or control his head, he's doing all of these again. However, during this hospital stay, we found out Owen's dr. thinks his condition is degenerative, which was a blow that was difficult to digest. Leaving for Johns Hopkins in two days, we are still in the investigative stage of Owen's journey. We don't know how much time he has, we don't know a specific diagnosis, and we don't know how to control these seizures. We do know that we'll love and support him unconditionally as all of you do as well. Gavin and I can't ever fully express how grateful we are for everyone's help. All we can do is say thank you with all our hearts.