Community rallies around child with rare form of epilepsy
Hartselle Enquirer - 2/8/2018
Hartselle City Schools students and teachers will wear purple Feb. 9 to support 9-year-old Katie Grace Prater.
A third-grader at Crestline Elementary School, Katie Grace has a rare form of epilepsy, one that causes developmental delays and poses a threat to her very life. She carries the SCN8A gene mutation and is one of the 100 cases known worldwide.
Katie Grace's mother, Kasey, works at Hartselle Intermediate School. She said the schools and the community as a whole have rallied around her family to offer love and support through the years.
The type of epilepsy Katie Grace deals with is also known as The Cute Syndrome. According to Kasey, it is an aggressive disease. Since July 2016, Katie Grace has been admitted into the hospital seven times.
"It's very aggressive, and once it starts acting up, you're going to have your good days and then you're going to have bad," Kasey said. "Getting older, with her hormones changing ? it might have thrown it off balance. Usually with epilepsy, both males and females, when your hormones change, your seizures change."
Katie Grace suffers from myoclonic seizures, during which she loses focus and muscle control and has spasms for 10-45 minutes at a time.
Kasey said watching her daughter suffer through each episode takes an emotional toll on her family. "It's very heartbreaking. We have seen her regress and then slowly go forward," she said. "Every time she has these seizure episodes, we lose a part of her. It's a very emotional thing."
In two years, Katie Grace has been seizure-free for 12 weeks only once ? until now. Last week, she passed the 15-week mark.
Kasey said she is thankful for the milestone and hopes it will continue. "We don't really have a game plan right now. If she were to start seizing tomorrow, we wouldn't really know what we would do because we've had 13 medicine changes in two years," Kasey said.
Kasey said she does not know where her family would be without the outpouring of support from her work family and the community. Hartselle Intermediate School raised more than $4,000 last year to send the family to Washington, D.C., to an awareness conference.
"My work family here is amazing. I love my job. It lets me have my time with my kids, and right now, this is the best job for me because of Katie Grace. The support system through the school is absolutely wonderful. We couldn't ask for anything better," Kasey said. "I can't express what this community means to us. We wouldn't know what do without everyone pulling together and helping."
Kasey said to know Katie Grace is to love her. "She's a very addictive person," she said. "She loves everybody, and she has a heart of gold."
Kasey said Katie Grace will never have a normal productive life, but the family tries to live life day-by-day. "Life expectancy is not good," she said tearfully. "We're looking at maybe 20 years. We try to live each day the best way we can."
Kasey added living in Hartselle, and knowing help and encouragement is a phone call away, makes life for the Prater family so much easier.