Kraft family works to beat epilepsy

During last year’s quarantine, when her children were home from school, Katie Kraft noticed her second child, Otto, would just collapse.

Over the summer, he collapsed and hit his head on something hard, and the Homewood family realized something was wrong but didn’t know what it was, she said.

“It was very difficult,” Kraft said. “We didn’t have a great understanding of what was happening.”

While they had been told of drop seizures, which are short in duration and cause the loss of muscle control, the Krafts were told it was rare and did not think that was what Otto was experiencing, she said.

In early August 2020, Otto experienced a tonic-clonic seizure, also known as a Grand mal seizure, which causes violent muscle contractions and loss of consciousness.

“That was absolutely terrifying,” Kraft said. “William [her husband] screamed for me. He [Otto] was seizing and wasn’t responsive. … He had this period where he was just completely limp.”

The family eventually wound up at Children’s of Alabama hospital under the care of “absolutely amazing” neurologists, Kraft said. Otto was given a long-term electroencephalogram, a test that measures brain waves, and doctors discovered he was having yet another type of seizure while he slept.

After diagnosing Otto with epilepsy, doctors put him on medication, which has kept him seizure-free for more than a year, Kraft said.

“It took us months to stop thinking about it constantly,” she said.

The Kraft family had to have discussions about whether Otto could do things like play on the playground or swim, or even ride in the car, Kraft said. They also went through seizure training and developed an action plan.

“The unexpected … has been a huge adjustment for us,” Kraft said. “The big thing was feeling like we had no control.”

Thankfully, with continued medication and positive steps forward, there is a “pretty good likelihood” that Otto could grow out of seizures, Kraft said.

The family gave Otto’s teachers and school leaders a plan of what to do if he had a seizure while in school, Kraft said. Most seizures don’t require calling 911 because the danger with seizures has more to do with what happens as a result of the seizure, such as falling and hitting the head, than the seizure itself.

Otto needs a second year without any seizures to start weaning off his medication, Kraft said. Then he will have another EEG done to see if there is any seizure activity occurring without medicine.

“The whole thing is difficult and stressful,” Kraft said.

While there are usually concerns about side effects, such as becoming lethargic, associated with Otto’s medication, Kraft said they have not experienced anything like that.

The family is fortunate to have a large support system, including family, friends and neighbors who have stepped in to help with the other children and in other ways, Kraft said. The family also has been supported by God and spent a lot of time in prayer, she said.

The Epilepsy Foundation Alabama group has also played a key role in supporting the family, Kraft said. “They actually have all of the resources.”

The family is especially thankful for first-aid and seizure training.

“It was empowering in a lot of ways,” Kraft said.

Learning about the different types of seizures also was helpful because she didn’t know there were multiple types before going through this situation with her son, she said.

“Having that confidence that I was ready and prepared for the unexpected was the only thing that gave us back some control,” Kraft said.

People need to understand how common epilepsy is and how many types there are, but also to not “freak out,” especially if they have a great support system, she said.

“That person needs to know that there are people who are going to handle things while a seizure is occurring,” Kraft said.

The key is to have people stepping up to help, she said.

Sara Franklin, the Epilepsy Foundation’s executive director of community engagement and partnership for Alabama, Mississippi and Louisiana, said knowing how to help someone during a seizure can make a difference and save a life.

“While there are many different types of seizures, during many of them a person may be confused, not aware of what is going on, or unconscious,” Franklin said. “A person could get hurt during a seizure, or a seizure could last too long, or the seizures could cluster.”

Franklin said one out of every 10 people will have a seizure at some point in their life, and one in 26 will be diagnosed with epilepsy.

The foundation seeks to help bring an end to epilepsy in the state by: connecting people to treatment, support and resources; leading advocacy efforts; funding innovative research and the training of specialists; and educating the public about epilepsy and seizure first aid, Franklin said.

The foundation also offers people a way to become “Seizure First Aid Certified,” by visiting learn.epilepsy.com. The certification is intended for people who have a family member, loved one or friend with seizures, have a job where they provide care for those with seizures, have a job which works with the public, or work with someone who has seizures, or someone who coaches or leads groups, Franklin said.

Walk to End Epilepsy

WHERE: Railroad Park in Birmingham

WHEN: Saturday, Nov. 6, registration at 10 a.m.; walk at 11 a.m.

COST: Free, but participants are asked to donate or raise money

WEB: walktoendepilepsy.org/birmingham

Walk to End Epilepsy

The group’s annual big fundraiser, the Walk to End Epilepsy, is scheduled for Saturday, Nov. 6, at Railroad Park in downtown Birmingham.

Registration for the approximately 1-mile walk around the park will begin at 10 a.m., and the walk is scheduled to start at 11 a.m.

The event aims to raise awareness about epilepsy but also to raise money. There are no mandatory fees to participate. Instead, individuals and teams ask people to sponsor them in the walk with donations to help support research and services for people with the disorder.

The first Walk to End Epilepsy in 2018 drew about 200 people and raised about $13,700, Franklin said. The following year, 700 to 800 people came out and raised $68,000. Last year, the walk went virtual due to the pandemic and raised a record $93,000, she said. The goal this year is $100,000.

As of late September, 37 teams with 216 people had registered, and almost $55,000 had been pledged or raised, according to the Birmingham walk website. People with epilepsy and people who raise $50 or more get a free T-shirt.

While this year’s walk is once again a group walk, the venue is large enough to allow for social distancing, and there will be hand sanitizer stations, organizers said. Also, organizers say they will monitor COVID-19 guidelines from the U.S. Centers for Disease Control and Prevention and state and local authorities and make adjustments as needed.

To sign up as an individual or team, or for more information, go to walktoendepilepsy.org/birmingham.

For more information about the foundation, visit epilepsyalabama.org.