Dealing with Dravet

For the duration of their son’s life, the Smith family has adapted their lifestyle to fit his needs.

They spent weeks in the hospital.

His father quit his job.

They lost their home.

But they kept chugging.

Now, nearly nine years later, Logan Smith is the 2020 honoree for the No One Fights Alone benefit, an event focused on helping a local family in need. The benefit begins at 6:15 p.m. Friday at The 615.

Logan, 9, has been battling seizures since he was five months old. He received several different medications and treatments, but nothing seemed to help.

“He had so many seizures that we were calling the ER, calling the ambulance, being hospitalized,” Laura Smith, his mother, said.

His family took him to Cleveland Clinic in Ohio to see if he would qualify for brain surgery. It was then that neurologists recommended a genetic test.

At 18 months old, he was diagnosed with Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI).

Categorized by frequent and/or prolonged seizures, infants with Dravet syndrome are generally diagnosed within their first year of life. About one in every 15,700 babies have Dravet syndrome, according to a 2015 study from the American Academy of Pediatrics.

Other common health issues for children with Dravet syndrome include:

•Behavioral and developmental delays

•Movement and balance issues

•Orthopedic conditions

•Delayed language and speech issues

•Sleeping difficulties

•Sensory integration disorders

•Growth and nutrition issues

•Chronic infections

•Dysautonomia (which leads to difficulty regulating body temperature, heart rate, blood pressure and other issues)

Logan is now on eight medications. None will make the seizures stop, although they are less severe than years past, Devon, his father, noted.

For the first seven years of his life, Logan’s seizures lasted 30 minutes to an hour. His longest seizure lasted four to five hours.

Now, he generally has about six to eight seizures every night lasting only a few minutes each. While being interviewed, Laura pointed out Logan had a quick seizure. He blinked his eyes and paused.

“But he’ll get through it,” Laura said as she sat next to him. “It’s just that stimulation and just, sometimes if he just sits still too long, you’ll see (he has) a little flutter.”

Logan hummed the sound, “hmmm.” His dad and mom echoed, looking at him and smiling.

“Looking at Logan, you might think he’s totally fine,” Laura, who works as a behavioral therapist, said. “You may not see the struggle that he’s going through. I encourage questions from people.”

Although his seizures are shorter before, Sudden Unexpected Death In Epilepsy is always a cause of worry. About 15% to 20% of children with epilepsy die from prolonged seizures, seizure-related incidents (i.e. drowning) or infections, according to the Dravet Syndrome Foundation website, dravetfoundation.org.

“A lot of times it’s just kids that — they may be seizure-free for six months and the parents are thinking, man, we’re getting this, you know,” Devon said. “We’re doing it. And then they wake up one morning and their kid’s not there anymore.”

About a year after Logan’s birth, Devon left his job at FCC (Indiana) to stay home with his son. The family soon realized the difficulties of living on only one income, losing its house in Powers because they couldn’t afford it.

They moved in to the house that once belonged to Laura’s grandmother, located directly beside Clarel and Kay Strausburg, Laura’s parents.

Devon started an online business selling hostas as “a form of self-care” for when he wasn’t taking care of Logan. Laura also decided to go back to school and get her master’s degree in an effort to increase her earnings.

“So that’s kind of part of our journey,” she said. “We sacrificed — especially you, honey,” she said, glancing at Devon, “sacrificed quite a bit of time and energy during that time so we could hopefully have a better life for our family.”

Laura and Devon liked to go camping together when they were younger. Now, with Logan’s heat sensitivity, they don’t spend much time outside. Anything much hotter than 70 degrees triggers his seizures.

That doesn’t stop Logan from loving the outdoors.

“The activity level that he would love to have is (indicative) of how limited they have to keep his life to keep him healthy, but he just loves to be active,” his child caretaker Jean Franck said.

She has been working around children with disabilities for nearly 30 years and she has worked as Logan’s nurse a few days a week for about five years, except for recently amid COVID-19 precautions. She helped to give Devon a break when needed, and to allow both parents to spend some time alone with their 10-year-old daughter, Lucy.

Logan may not be in attendance Friday at The 615, but Laura and Devon may take turns watching their kids and spending time with community members at the benefit.

The 615 organizer Tim Morris said they’ve been looking for a new recipient for the benefit since last year, when they raised nearly $8,000 for three local families. He noted Logan’s story mattered, and his mother was more than willing to open their family up to the public.

“She was open to letting us do this — that’s not easy for people to do,” he said.

The donations Logan’s family receive will likely go toward finding an assistant dog for Logan from the organization Four Paws for Ability in Xenia, Ohio.

Contributions can be made in-person at the event or online at venmo.com/Tim-Morris-116.