Leo’s symptoms have officially been classified as ESES (Electrical Status Epilepticus during Slow Sleep). Think about your worst night’s sleep then multiply that by a thousand. This is the disruptive sleep kids with ESES experience EVERY NIGHT. Skill regression is common because the brain cannot rest. A small percentage of children who have ESES also have LKS (Landau-Kleffner Syndrome), which affects their language. This is why Leo lost the ability to speak last summer.
There are about 1000 documented cases of ESES, and even less with LKS, but the number is growing as research helps doctors understand more about the effects of this disease. Leo was one of the lucky ones. Treatment gave him his voice back. For many with LKS, the language loss is permanent.
Unfortunately, Leo is experiencing regression in his fine motor and language skills, so it’s back to the hospital for more tests and medication updates. This is typical for Leo and others with this disease. Many days it feels like one step forward, two steps back.
On April 27 we will take steps to raise money for epilepsy research so we can learn more about LKS and other types of epilepsy. Please join us on the walk or via a donation if you can. Click the purple “Join Our Team” button at the top of the page to register or donate.
Team page link to share: https://epilepsyfoundation.donordrive.com/team/6910
See below for our story if you're not familiar, but I wanted to update this page quickly for anyone who may be following along at home. The medical intervention in October -- crosses fingers, knocks on wood, etc. -- has been a huge success so far. Leo is walking, talking, and regaining skills every day. He's even back at school part time! We are not out of the woods, but Leo's recovery and rehabilitation thus far -- from what was essentially a major brain injury -- has been nothing short of amazing. With that in mind, now more than ever, we hope to make the April 27 Walk to End Epilepsy a celebration. Click on the link to "Join Our Team" to register for the walk if you want formally join the oh-so-prestigious "Leo's Lions" and come walk with us on April 27. As the date approaches, we will send out more details, but assume a morning walk in DC followed by an afternoon party at our house! Thanks to all of you for your continued support of Leo and our family!
For those on this page who don't already know, our son Leo lives with epilepsy. His first "big" seizure happened in the middle of the night while we were on vacation more than four years ago. It was almost certainly the scariest event of our lives. There have been good days and bad (and good months and bad) since then, but in general, current medicines / treatments have not been successful in preventing his seizures and have often had less than ideal side effects. Right now, he can't talk or use his hands to manage everyday tasks, and he relies on a feeding tube for his meals. It's hard, but Leo is the toughest kid out there. As anybody who's met him knows, though, he's also kind, sensitive, and smiley (as long as he's not angry;). When he laughs, it's contagious. He loves trains and planes and trucks, jumping into puddles, wearing costumes, swimming, MarioKart, being outside, and playing with his sister. He's a joy. But epilepsy is robbing him of time he could be spending outside or swimming or playing with his sister or jumping into puddles.
That said, we also know we're lucky. We have great doctors and teachers and a family that is beyond supportive - and we remain hopeful that we will soon find a way to help Leo that works. But not everyone is as lucky as we are, and even the lucky ones sometimes need help. That is why we support the Epilepsy Foundation and are raising funds to make a difference in the lives of people like Leo living with epilepsy. The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
So, if you have the means to do so and you care about Leo or anyone else living with epilepsy, we ask you to please consider supporting this cause by making a safe and secure donation to our fundraising webpage. Any amount helps. Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the 3.5 million people in the U.S. who are living with epilepsy and seizures. Better yet, donate something AND come join us (Leo's Lions! Rawr!) in DC for the Walk to End Epilepsy on April 27, 2019 (it's a long ways away, so plenty of time to make travel plans!).
Thank you for your help and support!
-John, Lisa, Izzy, Leo & Flash