Jeannie Schnur: Jackson's our 6 year old son. He's our oldest. He was diagnosed with infantile spasms when he was 14 months old. And then about a year later when he was 2, he was diagnosed with Lennox-Gastaut Syndrome. LGS is a rare childhood epilepsy. It's very hard to diagnose. It's composed of multiple seizure types, severe developmental delay and an abnormal EEG. When we got this diagnosis, our life was completely changed.

 

Carl Schnur: When Jackson was diagnosed, we were shocked. We knew nothing about epilepsy or how to treat it or how it impacts daily life. Recently we moved into this home where we have a carpeted basement and we're able to fit all his sensory equipment in there, his toys, his fun and it's also an environment where we can actually sit and relax. It's been great having that space.

 

Jeannie Schnur: Jackson is a sweet lovable boy. We always love his hugs and kisses. He comes right up to you. He will go to anyone and he wants always to be held. Jackson is nonverbal so that is a challenge for us because he can't talk. He can't tell us really what he wants.

 

Carl Schnur: Last summer we started trying a new communication system with Jackson using picture cards placed around the house. That has made life a little bit easier because he feels like he has a way to communicate with us and we know what he wants. We have two other kids; Tenley is 5 and Ben is 15 months. When I was pregnant with Tenley, Jackson was just getting diagnosed with infantile spasms so Tenley has always been around epilepsy and special needs, and it's just been something that she's grown with and she's embraced. She's such a sweet girl. She knows so much just because of what she's been exposed to. They're really sweet kids and we just love them.

Tenley: I help my mom and dad take care of Jackson. He can't talk and he has to grab us to tell us something.

 

Carl Schnur: When we learned that Jackson would be featured in a Medikidz comic book, we were thrilled because we've never been a part of something like that. We liked the idea of a book that's easy to understand for really any age to explain Jackson. People don't understand epilepsy from the beginning, and what Jackson's got is very unique. He's developed his gross motor skills so he can run and climb, but he's got the cognition and communication level of an 8 to 12 month old. So it's a really interesting combination.

 

Jeannie Schnur: What I would tell other families is to get involved right away. It's really hard to navigate this by yourself, pretty much impossible so you can get involved in your local epilepsy chapters, definitely go to the LGS Foundation; they are wonderful people. They will help you find whatever resources you need, and most of the time when you get in contact with them, you'll meet other families, other parents that have already experienced something similar to what you have, so it's like you're not alone. Being a part of the Medikidz team has really made us excited because we didn't have resources like that when we were first introduced to this world of epilepsy and a chronic disease, so being able to provide a book that simply explains the disease, how it can be treated, how daily life might be is huge.

 

Tenley: I love you always Jackson.

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