Will and Charolet Make A Difference
Kids Making A Difference

Will and Charolet's Story

Will Doing Parkour

Will, now 9 years old, was 5 when he started having seizures. The first seizure he had, his mom thought he was making a weird face. When his seizure stopped, she asked him to stop making that face...she didn't know he was having a seizure. Will didn't know either. Will says, “I had no clue what she was talking about because I didn't remember anything.” When Will did it again, she videotaped it. The next day, Will’s parents took him to the doctor because they knew something was wrong. The doctors told Will that he had epilepsy. Soon, he was having 80-100 seizures every single day. Will describes his experience by saying that he didn't know when he was having a seizure so when he had one, he felt like people were in fast forward motion. “It was almost like I got lost for a bit and then when I came back they were in a different spot or somewhere else than before.”

Will eventually went to a hospital in Ohio where he started the Ketogenic diet (a type of therapy where people eat a special high-fat, low-sugar diet). After two weeks, his seizures stopped! He didn’t like the diet because he had to drink a lot of oils and couldn’t have many of the foods he enjoyed. But he thinks it was well worth it because he got to start being himself again and doing the things he loved like riding his bike. Now, he also plays basketball and baseball and loves jumping around doing parkour.

During the time when Will was having his seizures, the only thing that kept him positive was knowing everyone who loved him was trying their hardest to help. One of those very important people was his 8-year-old sister, Charolet. She was 4 when Will had his first seizure and remembers being with him through most of them and being scared, but knowing everything would be alright. Charolet has been one of Will’s biggest supporters. Every time Will had to stay a long time in the hospital, she would visit him. She didn't like being away from him or seeing him sad. Charolet said, “We would play video games in the hospital bed most of the time while he was doing good. I told him I was like his little nurse. I would hold his hand and tell him I would take care of him and tell him what happened when he was having his seizure so that he didn't miss out on anything.” When Will started his special diet, it changed how their family ate. But Charolet was happy to help Will feel more comfortable. “I would eat butter with him so that he didn't feel like he was doing it all by himself. I did not like the butter, but it made Will happy to know I cared and would do anything for him”

Will and Charolet Purple Pumpkin Project
Purple Pumpkin Project at School

Through the experience, Will and Charolet have learned how to treat others who may have health issues. Will thinks, “The way people treated me and were so helpful and supported me, has helped me learn to look for ways to help other people.” Their whole family is involved in the epilepsy community. Every year, they organize a team for their local Epilepsy Foundation walk and call it Team Will-Power. Family and friends attending the walk wear their team shirts to support Will and others with epilepsy. Will’s family also organizes a big Purple Pumpkin event at his school and another nearby school. In 2017, they decorated purple pumpkin pails. Will loves being a part of it. The event gives him a chance to share his story and talk with other people who have epilepsy or might know someone with it. “No one in my class knew anything about epilepsy, but now everyone in our school and other schools know what to do when people have a seizure.” Charolet also helps with the event and adds, “We went from class to class and talked to kids about epilepsy while they decorated their purple pails. A lot of them asked me questions while I was helping them decorate. It was really cool to talk to them about why we do purple pails and what they could say to anyone who asks them about their purple pail.”

Will and Charolet Earn Their Purple Pumpkin Pin
Earning their Purple Pumpkin Project Pins

Will and Charolet have become a wonderful team of advocates. Will understands it is important to teach other kids about epilepsy so if they see someone having a seizure, they know what to do. He believes that if people understand epilepsy, they will treat others better. He thinks it is important to start teaching kids about it when they are young so when they grow up, they will talk about it with their friends and their own kids. Charolet feels it is especially important for kids to teach other kids and believes, “Parents and adults feel different than kids, so sometimes kids understand it more when other kids talk about it and not adults. Grownups use too many big words!”

Will also has some advice for other kids going through a tough time. He has been through a lot and knows how it feels. He encourages kids to be positive and offers, “Just know that it will be okay and you will get through it. It is not fun to have seizures...it's really scary, but there are lots of people out there looking out for you and trying to find a cure for epilepsy. Never give up!” For siblings of kids with epilepsy, Charolet says, “Just stay with your brother or sister and help as much as you can. They are just as scared as you are but knowing you're right there with them makes them feel a lot happier and a lot less scared."