By Emily Williams
Epilepsy has been a part of Tom and Louisa Jeffries’ lives ever since their oldest daughter, Reed, was diagnosed in kindergarten with absence seizures. At the age of 12, she began having grand mal seizures.
“There is a huge stigma around epilepsy,” Reed said. “One in 26 people have it, but how many people do you know who say, ‘I have epilepsy’? That is a pretty small group.”
The Jeffries family, who live in Homewood, are trying to change that one step at a time.
According to the Epilepsy Foundation, epilepsy is the fourth most common neurological condition. One in 10 people will have a seizure at some point.
To shine a light on the topic and honor Reed and her younger sister Anne, who also was diagnosed with epilepsy, the family each year has walked in the Epilepsy Foundation of Alabama’s Walk to End Epilepsy Birmingham.
Reed will be one of the featured speakers at this year’s event, the Virtual Walk to End Epilepsy, on Nov. 7.
The presentation will be held via Zoom at 9:30 a.m. Participants are encouraged to walk in their own neighborhoods, on their treadmills or wherever they choose on the same day.
Reed’s doctors told her this summer that she possibly has outgrown her epilepsy and is considered “seizure free.” Yet, epilepsy is something that has shaped her life and defined her childhood, for better or worse.
“I was very lucky in that my seizures were always well controlled, it was more the side effects from the medicine that really affected my childhood,” Reed said. “When I was little it would be stuff like nausea, but as I got older it was the way it affected my mood.”
In addition to emotional changes caused by medication to manage the disorder, epilepsy can be isolating and cause depression.
Reed has supported her younger sister, Anne, through her epilepsy journey, an influence she wishes she’d had in her childhood. She also hopes to be a source of support for other kids.
“I’m so amazed by my own children. Eva who wasn’t affected, has taken it upon herself to become so involved in the (foundation),” Tom said. “So, I really think that that is what I have seen echo throughout my whole family.”
Upping Her Involvement
While juggling her studies and participation on her high school tennis team, Reed made the decision last year to become more involved in the Epilepsy Foundation.
She applied to participate in the foundation’s Teens Speak Up program, and she was chosen to represent Alabama at the conference, held in February in Washington, D.C. Just one teen represents each state at the conference.
“That was a really amazing experience,” she said. “I’ve never met that many people who had epilepsy before and it really made me so thankful.
“When I heard about their struggles, I feel like mine were nothing compared to what a lot of them or their siblings have been experiencing – brain surgery, bullying” and such, she said.
Not only was she able to meet with other kids and learn from them, they all took time to meet with their states’ federal legislators to advocate for epilepsy research and support.
Reed spoke at the offices of Alabama Sens. Doug Jones and Richard Shelby, and she spoke personally with Rep. Gary Palmer to ask for increased funding for CDC epilepsy research and training for school nurses.
According to Tom, the support of full-time on-site nurses at Homewood City Schools was invaluable to the entire family.
“Whether it be at the elementary, middle or high school, we have been blown away by the nurses and the people we are surrounded by in our community,” he said. “We know that if Reed had been at any other school, she may not have had the same level of support, so we are all just very grateful to Homewood.”
The Jeffries’ twins, Anne and Eva, have joined the organization’s Kids Crew, a program for kids ages 14 and under. Kids who are involved complete awareness tasks and training, and they earn pins they put on lanyards.
“It’s just for people who want to learn more about epilepsy and be more supportive of people who have it,” Louisa said. “Eva has just earned her eighth pin for the year, for which she will receive a special award called the World Changer Award.”
To earn pins, Eva has written to legislators about supporting epilepsy and made cards for the neurology clinic at Children’s of Alabama. She and Ann have painted pumpkins for the foundation’s Purple Pumpkin Project.
Involving the Schools
Reed started a Walk to End Epilepsy Club Homewood at the high school in the spring and had recruited about 80 members before the 2020-21 school year started.
The club already has spread awareness throughout the school. It has hosted bake sales and a Candy for a Cause fundraiser, in which students paid to guess how much candy was inside a bowl.
Members of the club handed out purple ribbon pins one day, and Reed said it was amazing to see hundreds of her peers and teachers in the halls sporting their purple in solidarity.
Eva and Anne also held a Lemonade for Libby stand, a national Epilepsy Foundation fundraiser, at the West Homewood Farmer’s Market in the summer with members of Reed’s high school club.
“As a parent, I think the biggest thing, whether it is the foundation or watching our children become more involved in epilepsy education, has just given tremendous empathy to all of us for those who are going through it and those that are newly diagnosed,” Tom said.
“You take pause because you know what that child or that adult is about to go through,” he said. “Having seen it firsthand, it certainly has raised my awareness and made me a lot more empathetic to those who are challenged with it.”
To sign up or for more information, visit walktoendepilepsy.org/Birmingham.