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Young girl writes children's book about epilepsy experience

Epilepsy advocate raising awareness
Young girl writes children's book about epilepsy
Posted at 10:25 PM, Sep 08, 2019
and last updated 2019-09-09 16:55:48-04

COLORADO SPRINGS — The Epilepsy Foundation of Colorado reports that 60,000 people in Colorado live with epilepsy. News 5 met with one young woman hoping to raise awareness about epilepsy, specifically for children who have it.

Mariah Mayhugh wants children living with epilepsy to feel comfortable talking about it, which is why she just finished writing a children's book about her experience with epilepsy. "I was diagnosed with epilepsy when I was seven... I didn't understand why we had to go to Children's Hospital, or why I had to do these tests, and I was afraid," said Mayhugh, who lives with two forms of epilepsy.

Mayhugh deals with both absence and tonic-clonic seizures. She said the absence seizures are more difficult to recognize. "They're really like a daydream, where you will just kind of like stare off into space for a minute or less, and you won't react, you won't talk to anyone, you'll just stop whatever you're doing... You cant see anything, you cant hear anything, it's like you go unconscious but you're standing upright," said Mayhugh about the absence seizures.

The book is about a young girl named MiMi, which was Mayhugh's childhood nickname. It follows her journey as she learns what epilepsy is and how to navigate it. "Nobody understands, her teachers are telling her that she's not a good listener, and her parents are kind of disappointed in her, her friends don't understand," said Mayhugh about the character. Mayhugh said the book is scheduled to be published in December, and her sister is illustrating it.

Mayhugh said she has applied for grant money to make sure they can donate the book to several places, without making them purchase it. "We are looking to donate as many copies as possible to the Epilepsy Foundation of Colorado, Children's Hospital, local schools," said Mayhugh.

Mayhugh has many other projects in addition to the children's book, including a support group she and her mother host. It's called Circle of Friends and they meet every second Thursday of the month at the Colorado Springs Fire Station Number 14. Mayhugh said the meetings are a chance for people with epilepsy to connect with people who understand the issue, and they start at 6 p.m. and last until 7:30 p.m. "Kids with epilepsy have a higher rate of mental health issues, such as depression and anxiety, and it's just not healthy to keep something like that in," said Mayhugh.

She said she hid her epilepsy from other students throughout high school, and doctors told her parents she may struggle in her classes. "By senior year, I graduated with my associates degree, and this totally blew my all of my doctors away," said Mayhugh. She said her mother homeschooled her for both elementary and middle school, and she attended the Springs Studio for Academic Excellence for her high school years.

Mayhugh is also participating in the Strides for Epilepsy 5k starting at 9 a.m. on September 15 at Memorial Park. Her team, The Epilepsy Avengers, hopes to raise $1,000 to send two children to The Epilepsy Foundation of Colorado's Summer Camp next year. If you would like to help her team meet their goal, visit this link to pledge.