Kathie’s Story: Meeting the Challenge of Severe Eczema

When Kathie Mosby’s son was born 16 years ago, she had her first taste of what it’s like to care for a child with moderate eczema. But even that couldn’t prepare her for what was in store for her daughter Nayla, born four years later. The severity of Nayla’s eczema confounded her dermatologist and pediatricians. From the age of 4 months, Nayla’s skin was raw, itchy, and covered most of her body. “It never really let up,” says her mother.

Already in her young life she has been hospitalized three times for out-of-control skin infections and one of those was for life threatening septicemia (bacteria in the bloodstream). She’s also been hospitalized several times because of asthma, which often accompanies eczema. It’s been a long, rough haul.

“We tried everything,” says Kathie. “Topicals. Photo therapy. Wet wraps. Nayla’s eczema just kept getting worse.” Kathie tried her best to give Nayla as normal a childhood as possible. At five, Nayla took up gymnastics. She became good enough to compete but was crushed by frequent questions about her skin and bullying. As her eczema worsened, she had to quit.

By the time she was 10, her eczema was so bad she could no longer wear clothes or leave the house. “She was smeared with emollients and covered in saran wrap. Those were the toughest times,” said Kathie. “I was worried that her isolation and sadness would affect her.” Her sunny articulate, funny kid was disappearing.

Then in August 2020 Nayla started on one of the new drugs just becoming available for children under 12. Was it a game changer? “Yes,” said Kathie. “No,” said Nayla, at the exact same moment.

So why didn’t Nayla think the new drug changed her life significantly? “It didn’t help as much as I expected.” Though things did improve, Nayla was hoping for more. She still battles conjunctivitis (eye inflammation that occurs in 28% of kids taking the medication.) Nayla acknowledges that the new drug allowed one big change for her. For the first time in her life, she has a best friend. She met Jordan in Gavel Club and they are now inseparable. “She never asked me about my skin, not once,” she says. Nayla even wrote a short story about a child’s first day in school and the friend who had her back when kids teased her about eczema.

Despite how all-consuming their ordeal has been, Kathie and Nayla are looking forward to new experiences. Kathie is applying to send Nayla to Camp Wonder this summer, a weeklong camp for kids with severe skin diseases. And Nayla is thinking about whether she wants to join GPER’S youth group so she can talk to other kids who understand what she’s going through.