Living with epilepsy: 1 family’s journey of discovery and triumph
Approximately 65 million people around the world are living with epilepsy, and two of those people live under one roof in Homewood.
Louisa and Tom Jeffries have three daughters: Reed, 17, is a senior at Homewood High School. Anne and Eva are 10-year old twins.
When Reed was about 6 years old, Louisa and Tom began noticing some changes in her behavior. It seemed like Reed wasn’t listening or couldn’t hear her parents talking.
“Her hearing had been tested, and it was fine,” Louisa said. “But it was unusual for her to ignore us.”
Reed’s pediatrician discovered Reed was having absence seizures, which are brief and hard to recognize because it looks like the person is daydreaming.
“I really didn’t know anything about this form of childhood epilepsy,” Louisa said. “I never knew anybody that had that.”
Then, seven years later, Louisa saw the same symptoms in one of the twins. Anne, who was also 6 years old at the time, was having absence seizures and tonic-clonic seizures — these seizures can make a person fall to the ground, lose consciousness and have muscle jerks or spasms.
Looking back on that time, Reed said she is most proud of being able to offer support to her sister.
“I feel like it helps her knowing I’ve experienced basically the same thing and that I’m here for her,” she said. “And I couldn’t be more grateful for my family and how they’ve handled everything. They’re my advocates and my best friends.”
Now Reed and Anne are thought to have outgrown their epilepsy. Both have stopped taking seizure medication and have been seizure-free.
In February, Reed was chosen out of all of those in Alabama with epilepsy to represent the state for the Epilepsy Foundation’s Teens Speak Up program in Washington, D.C. She was able to speak to federal legislators in Congress about the importance of legislation related to the epilepsy community.
“I’m really proud of her,” Louisa said. “It hasn’t always been easy to grow up with epilepsy, but she’s always had a lot of support from her doctors, school and friends. I know that’s not always the case for other people. That’s why her family thinks it’s important to be involved with advocacy for other people.”
Eva, who is the only Jeffries daughter who has never been diagnosed with epilepsy, spends time supporting her sisters and spreading awareness about epilepsy. She’s currently working on her World Changer Award through the Epilepsy Foundation Kids Crew. To earn the award, she has spent the past year speaking to her class about epilepsy, writing to her legislators about epilepsy funding, raising funds by having a lemonade stand, earning seizure first aid certification and more.
“It feels good to support my sisters and help end epilepsy,” Eva said. “I’ve read a ton of sad stories about how much worse epilepsy can be.”
During November, which is epilepsy awareness month, the Jeffries family hopes to continue spreading awareness about epilepsy.
Anne said she hopes people learn how common epilepsy is. According to the Epilepsy Foundation, one in 26 people in the United States will develop epilepsy at some point in their lifetime.
“That was a really big thing when I found that out,” Anne said. “I don’t know a lot of people that have it, but it makes me feel happy to know I’m helping other people. I think it’s an important cause.”
One of the Epilepsy Foundation’s annual events, the Walk to End Epilepsy, will be held virtually this year during the COVID-19 pandemic. The Jeffries family is one of the top fundraising teams for the event. The virtual walk will be Nov. 7 at 9:30 a.m. on Zoom.
Visit epilepsyalabama.org for more information.