NEA community members share their poetry in observance of National Haiku Day
Published On: Sep 9, 2019
Last Updated On: Nov 4, 2020
If you go to the Arthur Raceway near Essexville, Michigan, on a Friday or Saturday night, you’ll likely spot fourth-grader Ella Gradowski zooming around the track in her Mini-Wedge race car. Ella’s a regular, and the speed and thrill keep her coming back.
“It’s just fun,” the bubbly 9-year-old explained. “I like how you can go really fast, but sometimes you have to go slow. And I just like how some people like to go so fast, and I’m like ‘Don’t pass me! Don’t pass me!’”
It’s also hard to miss Ella’s car. It’s electric green and black and emblazoned with the National Eczema Association’s logo: a series of bright-white lowercase ‘e’s bubbling across its sides. That ‘e’ is for eczema, of course — but Ella and her mom, Lizz Gradowski, like to think of it as ‘e’ for Ella too.
Ella’s eczema started early in life. She was just 2 weeks old when she woke up from a nap, her face red and blazing. Lizz panicked.
“I called my mom because I didn’t know what to do,” Lizz recounted. “We took her in to the doctor, and he said that she’d grow out of it. Instead, it’s gotten worse and worse and worse.”
Desperate to find a solution, Lizz took Ella to specialists at the Henry Ford Health System and the University of Michigan. They tried many different treatments, but nothing worked.
Race car driving has been a source of comfort for Ella, although it’s not without its triggers.
Racers have to wear a heavy nylon fire suit and gloves, a helmet and a neck brace. It can get hot and itchy, but Ella makes a point to wear comfortable, loose clothes underneath and to unzip her fire suit between races.
Sometimes, she rubs her itchy spots up against the metal frame of her race car to scratch. But mostly, Ella said, “If I get itchy when racing, I keep going.”
Ella’s determination is impressive, however, navigating elementary school with eczema isn’t easy. Kids can be curious or mean, she said, and either way, it stings.
“People ask me why I’m red, or if we have to hold hands or if we have to touch each other, they’ll ask me why I’m so dry,” Ella said. “One time or two times, somebody bullied me about my lips because they were all chapped.”
“Her classmates get used to it and they understand,” Ella’s mom Lizz added, “but it gets harder when she gets outside regular class. Kids aren’t nice. She’s learning to cope with it as she’s getting older, but the main thing we have to tell the kids is that they can’t catch it.”
Last year was particularly challenging. Frequent bad infections, including MRSA (Methicillin-resistant Staphylococcus aureus), kept Ella out of school.
“I was sitting in the hospital with her on her eighth birthday on the last day of school,” Lizz recalled, “my phone rang, and it was the truancy officer.”
Lizz explained that Ella was in the hospital and that they were working on getting her eczema under control. But it was heart-wrenching, Lizz said, because she didn’t want Ella to miss her birthday and end-of-the-year festivities.
A couple of weeks later, Ella and Lizz attended their first Eczema Expo. It was a game-changer. Ella made new friends with similar life experiences, and Lizz and Ella met Dr. Peter Lio, assistant professor of clinical dermatology and pediatrics dermatology at Northwestern University Feinberg School of Medicine.
They were impressed by Lio’s expertise, and they liked how nice he was. Ella became Lio’s patient. Every few months, Ella and Lizz make the five-hour drive to Lio’s office. Together, they’ve tweaked Ella’s routine and started her on cyclosporine.
Ella now has a 504 plan, a provision that allows children with disabilities to receive necessary accommodations so they can succeed in school. This allows her to miss class when necessary, to stay cool by keeping a fan near her desk, and to access her moisturizers and medications during the school day.
“For us, it changed everything,” Lizz said. “There’s so much we’re able to do now. We’re able to feel better.”
This year, Ella wasn’t in the hospital on her birthday, and she got to participate in the field day on the last day of school.
She still has eczema and she still itches, but it’s more manageable. When it came time to decorate her new race car, Ella knew exactly what she wanted to pay tribute to: the organization that helped her find Dr. Lio and get her eczema under control.
“If people have eczema and they don’t know about Dr. Lio, I just wanted them to know about [NEA] so they don’t have to go everywhere and they could just go to Dr. Lio,” Ella explained.
Fittingly, the logo of Dr. Lio’s practice — Chicago Integrative Eczema Center — is on Ella’s car too.
Ella and Lizz went back to Eczema Expo again this year thanks to a lot of community support. Their friends and family saved aluminum cans and collected bottle deposits, and Ella’s grandfather, an avid motorcyclist, sold T-shirts to his motorcycle community to help fundraise for their plane tickets.
Giving kids with eczema the support they need takes a village. Between her family, her school, her doctors and her racing community, Ella has a fantastic support system. And this little champ isn’t letting eczema hold her back. She’s too busy revving up and hurtling ahead.