He's Lived His Entire Life Allergic to the Sun: Now He Helps Kids With the Same Condition

Craig Leppert knows what it's like to grow up with a rare condition most people have never heard of.

Leppert, 53, was born with erythropoietic protoporphyria (EPP) — essentially, an allergy to sunlight. As a result, he was often in pain anytime he went outside as a child. It took his parents and doctors some time to diagnose and understand the condition.

""Take the throbbing, hurting feeling of being cut with a knife and getting burned on a stove, those mixed together is what it feels like after 15 minutes in the sun," he told People of what it feels like for him to experience sunlight.

Craig Leppert's parents realized something was wrong when he was young

Leppert's parents first realized something was amiss when he was a toddler. While playing in a kiddie pool he began screaming — and they didn't know why.

"I started screaming bloody murder," he told People. "The next day, my hands looked like little boxing gloves." He was diagnosed with EPP when he was five.

Per the Mayo Clinic, EPP is the most common version of childhood porphyria. The website notes, "Sun or artificial light exposure quickly results in painful skin burning, irritation and swelling. Small bumps and blisters also appear. Repeated exposures can cause thick, leathery skin and scarring."

The diagnosis changed a lot for Leppert. All of the sudden, he was no longer allowed to go outside during recess, and he stayed inside during fire drills at school. His sister was also diagnosed with the condition, and his family skipped things like beach trips and outdoor time.

"My basement became like a second home in the summer," he said. "Our family became night people."

He also wore a wide hat, gloves, and a shirt that covered his neck anytime he did venture outdoors. Lepper recalled to the outlet that a gloveless trip to an amusement park in elementary school had dire consequences. "I ran into the shower — I didn't even take off my clothes — to cool my hands."

Though he has a handle on it now, the condition still causes him problems as an adult. As he told the outlet, he once ended up sunburnt on his face and went to the emergency room. Once he arrive, doctors initially thought he was an addict and going through withdrawal; in reality, he was suffering a breakdown from the pain.

"My condition made me aware of how different I was," he also said. "But I think it also made me more empathetic. I realized that some people have it even harder. It made me a better person." It also made him more determined: "It pushed me to try to be the best at everything I could. I realized that this condition is going to make me stick out, so I decided to own it."

Craig Leppert started a non-profit for kids with similar conditions

Despite the ups and downs, Leppert found a way to help other kids and families who are impacted by similar conditions. In 2017 he started Shadow Jumpers, which he originally imagined as a kind of "make a wish" organization that could send families on vacations that were safe for their kids.

The group has since found ways to send children and their families to the beach, to help children ride horses outdoors, and have helped with making changes (like adding tinted windows) to homes. They also have a summer camp that photo sensitive children can safely attend.

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