It was a small white spot.

Liz and Brett Sklow noticed this once under the eyes of their then 5-year-old son, Ethan. The stain did not harm Ethan or affect his vision. But it definitely affected Liz and Brett.

“We weren’t sure what it was, but we were lucky to catch it when we did,” Liz Sklo, Bexley resident and member of the current cohort Leadership of Jewish Columbustold the Columbus Jewish News.

After extensive testing at Nationwide Children’s Hospital in Columbus, they discovered that Ethan’s white spot was juvenile systemic scleroderma, a relatively unknown disease that affects between 5,000 and 7,000 minors in the U.S.


“We’re in this unknown journey that many autoimmune diseases are,” said Sklau, a member of Congregation Tiferet Israel in Columbus. “There are so many unknowns and not so many reasons why this is happening. It’s very cosmetic, but still, you never know what it might do in the future. We just put up with that.”

Significant medical problem unknown. Juvenile systemic scleroderma is an autoimmune disease that can cause facial deformities. Other potential symptoms of juvenile systemic scleroderma include abnormal growth of connective tissue, which can sometimes affect the joints and internal organs. In Ethan’s case, the scleroderma is only spread in the patch under his eye.

“Fortunately, it’s not life or death,” Sklau said.

To treat the condition, Ethan underwent a combination of treatments, including a 14-week course of the steroid Prednisolone. This was followed by weekly injections of immunosuppressants.

“I wouldn’t wish that on anyone, even for three days,” she said.

Ethan, now 6 years old and a first grader at Columbus Academy in Gaon, finished his treatment the same way he was before his diagnosis, with no growth or additional lesions under his eye.

“He’s doing great,” Sklau said. “He has a mark under his eye and that’s it. You’d never know he had that diagnosis. We are so lucky to have him in such great care. It did not affect his life in any way. He goes with the flow. He’s a really happy kid.”

Sklav, an avid runner who typically runs three to four miles a day, has become a fundraiser for juvenile systemic scleroderma research. Last year, she ran the Nationwide Children’s Half Marathon, raising $22,000 for research at the hospital.

Sklau will run the full marathon on October 16, the fourth mile of the marathon, which runs through the family’s hometown of Bexley, is designated the Patient Champion Mile.

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Cynthia Loucks, senior director of donor recognition at the National Children’s Hospital Foundation, said people like Sklau are essential to the fight against such diseases.

“Thanks to people like Liz, we can bring awareness to the community about what’s going on with her son, what research and support people can do to try to find a cure and support the types of efforts with diseases that you may not to know it’s even there,” she said. “They are very important for us to get the word out. Those families and donors who are truly there are our voices.”

For Sklaw, the marathon, the fundraiser, is all about fighting for Ethan.

“I stand by it and stand up for my child,” she said.

Steve Mark is a freelance journalist.