Seeing your first seizure is memorable; seeing your child’s first seizure is life changing. Taylor Roder still remembers every detail from her daughter’s first seizure. Peyton was just 2 years old at the time, and until September 28th, 2015 had been a healthy little girl who met every developmental milestone and rarely got sick.
Peyton had gone through the day with no problems and was put to bed after her normal bedtime routine. Then the crying started, followed by screaming. Thinking it was just a nightmare, Taylor tried rubbing Peyton’s belly to calm her down and wake her. It wasn’t until noticing how stiff her body was that Taylor began to panic.
Once they arrived at the local hospital, Peyton suffered two more seizures that night and had to be transported to the Twin Cities for further testing. It was discovered there that Peyton had Tonic Nocturnal Frontal Lobe Epilepsy.
Six months after her diagnosis, Peyton reached status epilepticus and was rushed to the PICU after two days of uncontrolled seizures. This was the first Taylor heard of the condition, and now two and a half years later still remembers how close she was to losing her daughter.
“There are times that we don’t even think of the fact that Peyton has epilepsy until it comes time for us to give her medication. Then, there are other times, where in the middle of the day reality hits and we’re reminded that there are certain things she can’t do that other kids her age can,” says Taylor.
While Taylor received plenty of help and support from family and friends, Peyton’s diagnosis left her frustrated and feeling alone. She knew of no other parents who had a child with epilepsy.
“A few months after Peyton’s first seizure I began to feel frustrated because nobody knew what I was going through as a mother. However, around that same time, a couple that my mother knew reached out to me via Facebook. They had a little girl who was almost a year older than Peyton and had epilepsy as well.”
Taylor also reached out to EFMN. Highlighting the challenges faced by those who live far from a regional city, Taylor learned the closest EFMN Connect Group was in St. Cloud – over 100 miles away. Determined to raise awareness and help others, Taylor’s made frequent trips to the Twin Cities for the OneIn26 awareness campaign and the annual EFMN Advocacy Day at the Capitol. She even started her own Connect Group near home for other parents who couldn’t make the drive to St. Cloud.
“I have received an immense amount of love and support since becoming so public about Peyton’s epilepsy. I want Peyton to be proud and confident in her epilepsy because it’s part of her. As she continues to grow, she will come to learn that not everybody is like her. I never want Peyton to question that it’s okay to be different.”