Children & Youth with Epilepsy
Every day in Canada, 43 people learn they have epilepsy. That's 15,500 people every year. At least 75% are diagnosed before the age of 18. That is why this year we have chosen our theme to be Children & Youth with Epilepsy.
We have asked some of these children and youth what it's like to live with seizures and to experience the diagnosis of epilepsy. Their siblings and parents fill in the gaps and help share their stories. Please listen to the voice of a child. Hear the innocence of a child or teen dealing with seizures, medications, testing, surgery, and sometimes isolation and sadness. Be amazed by their courage and resiliency.
Pepper
Pepper—the girl with the porcelain skin, bright hazel eyes and sunshine smile. The courageous girl in purple who is the strongest of them all. Pepper had her first seizure at nine months of age and after that frightening morning at the cottage, thousands more seizures followed, the cause of which is still undetermined. Her family is grateful to the healthcare workers and researchers, and to the Katie's Run community for fundraising for epilepsy research.
Rowan
Rowan's mom, Jane, asks him how his seizures make him feel. "Are they exciting, do they tickle, do they hurt?" He always indicates that they hurt—everywhere. Some of them are so uncomfortable that he tries to get away from them and ends up across the room. Rowan has had seizures since birth. When he was 6 he had a serious one that caused permanent disabilities. But he is a happy boy who delights in simple pleasures and a good pun can make him laugh for days.
Emily
For Emily, it started at the young age of nine. She speaks honestly about her experiences with hospital visits, tests, "disgusting" medication, protective parents and finally, surgery. She did not want surgery "in any case" but now, after being seizure-free for a year, she's glad it's behind her and is looking forward to getting her driver's license. Thank you, Emily, for sharing your story.
Katie Wesley
"I will never forget the day ... Mrs. Wesley, I think Katie had a seizure today." After that initial absence seizure, Katie's mom convinced herself the teacher was wrong and life would go on as planned. But then another mom called after a birthday party. "I saw what the teacher saw."
Katie would describe her epilepsy as what makes her unique, but she never let it get in her way. She advocated for herself, made sure her friends knew what it was and how to handle it. She loves to educate anyone she can on epilepsy.
Amelia
There are two nights Amelia's mom will never forget—the night Amelia was born, and the early morning of Dec. 26, 2017 when after an amazing family Christmas, an unknown electric shock wave changed their lives. Amelia was given the dreaded diagnosis of epilepsy. She says, "Epilepsy is not fun to have. It is hard." And she urges us all to learn how to keep people with epilepsy safe.
Zoey
"Epilepsy has changed my life in many ways," says 11-year-old Zoey. "In March 2018 I had brain surgery with electrodes sitting on my brain for two weeks. I was taken off all of my medication because I needed to have a seizure so the doctors could see where my seizures were coming from. I didn't have a seizure, so my epilepsy is still a mystery. The doctors called me a medical mystery."
Eve
Eve's family refers to her epilepsy as the "villain" that targeted her when she was almost three years old. Now nine years old, Eve shares, "It is scary living with epilepsy because you never know when a seizure is going to happen. I worry about what might trigger a seizure sometimes. I get nervous when I feel tired because it is how I felt before my last seizure."
She continues to say, "I participate in Katie's Run to raise money that I hope will help researchers find a cure for epilepsy, and I run for all the other kids who have epilepsy." Thank you, Eve!
Hannah
"Hannah started having seizures when she was just 6 months old ... Her trigger for her seizures was crying. As you can imagine, keeping a baby from crying is nearly impossible ... Hannah's big brother Bryson didn't understand what was happening when his little sister would have a seizure, but he knew everyone was upset."
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