FOR A GOOD CAUSE:Girl’s amazing grace to shine at race

One-third of 6-year-old Noelle Hermes’ body is wrapped in gauze and special dressings, as it has been all her life. Every other day, Noelle must endure the painful, two-hour process of changing these bandages, which cover large sores and blisters.

She has epidermolysis bullosa, a rare, genetic disorder affecting the skin’s ability to stay on the body, meaning the slightest rubbing or pressure can cause the skin to tear or blister. But Noelle’s kinetic spirit in no way reflects her fragile physical condition.

“What’s amazing to me is that she’ll fall and tear up her hand and get up minutes later and be out running again,” said her mother, Suzy Hermes, of Irvine. “She just gets up and keeps going all the time.”

Noelle’s resilience is sure to come in handy on Saturday at the Newport Dunes Waterfront Resort as she and her family participate in the second annual Noelle Hermes Foundation Amazing Race, a fundraising competition for all ages, modeled after the television show.

In addition to funding epidermolysis bullosa (EB) research, proceeds will benefit several affected families with needs beyond those covered by insurance. Last year, the event raised about $90,000.

“Research is important, but even more so we want to help families because EB is so expensive,” Hermes said. “It is not something you go through and it’s over. It’s a lifelong thing, and it’s there on a daily basis, affecting the entire family.”

Besides the skin, the disorder can affect the internal organs, eyes, gums and teeth, and in Noelle’s case, scar tissue from recurring blisters in her throat inhibit her from swallowing. As such, she is nourished through a feeding tube that was installed when she was only 9 months old.

Even so, with two older sisters, Noelle pushes herself to do what they do, including horseback riding, swimming and playing tennis, and her parents strive to keep their lives as “regular” as possible, focusing on their daughter’s abilities rather than her limitations.

“We could be bitter and we could be angry, but that’s not going to help us, so we choose joy,” said Hermes, admitting she’s more of a “sap” now than she was six years ago. “We definitely try not to complain about things we may have complained about before.”

HOW TO HELP

To support Noelle and other families affected by epidermolysis bullosa, the foundation is seeking prizes for teams participating in Saturday’s event as well as donations and sponsorships. For more information or to sponsor a participant, go to www.noellehermes.org or call (714) 473-2848.