Shadow Child A Rare Skin Disease Has Kept A Spokane Valley Child Out Of The Sun - Until Now

Nick Roberts learned to swim fully dressed.

Pants to his ankles, long-sleeved shirt, socks, hat, gloves, even a mask. So many clothes on such a small body that he also wore a life jacket so he wouldn’t sink.

So mostly, he’d swim at night. And play soccer. Chasing the ball with his brothers at midnight, in a huge Spokane Valley yard where his dad hung spotlights.

On summer nights, the 6-year-old would stay up until 1 a.m. - as late as he wanted - riding bikes in the driveway or playing basketball, a slumber party every night. He’d sleep in then, hours in the morning, and that was fine, too.

For the sun that streamed through the windows didn’t just wake Nick or warm him. It burned him. Exposure to ultraviolet rays - through windows, in a car, waiting for the school bus - blistered his tender ears, his cheeks and nose. Huge pox formed that took weeks to heal.

On airplanes, the blisters split open in the dry cabin air. Once a man asked him if he’d been dragged behind a dog.

“Mostly, kids left me alone because they thought they’d catch it,” the sixth-grader at Centennial Middle School said.

This week, Nick Roberts, 11, will vacation on the Oregon coast and, for the first time, will seem like any other kid on the beach. No gloves. No mask.

Age has done what sunscreen, specially made T-shirts and shade could not: made him more tolerant of sunlight.

“To see him enjoy things I didn’t think he’d ever be able to experience, that’s the biggest thing,” said his mother, Lauri Frandsen.

The youngest of Lauri and Mark Roberts’ three sons, Nick has grown up undercover, a modern masked man.

As an 18-month-old in the Spokane Valley, the bleeding blisters that erupted on his face, feet and arms baffled his parents. They soaked him in soothing oatmeal baths, administered cortisone cream, took him to specialists.

It took more than two years and an appearance before a national dermatology board before doctors in Spokane, at the University of Washington and the University of California-San Francisco concluded Nick had hydroa vacciniforme, a rare photosensitivity disorder found in children.

He was, he later explained to strangers, allergic to the sun.

“We hadn’t pegged it to the sun,” said his mother, an orthodontic clinician with Drs. Ellingsen and Paxton. “It’s weird to think of the sun, the nucleus of the life force, as the problem.”

Fewer than five cases had been recognized in the United States at the time, Frandsen said. Elsewhere, cases had been seen in children living near the equator, and the condition seemed to spontaneously improve by their late teens. But many sufferers in undeveloped countries died of secondary infections before reaching adulthood.

For Nick, doctors prescribed beta carotene, sunscreen and no more than 30 minutes of daylight exposure daily, period - through windows, in the shade or otherwise.

“It was a bank account that we had to watch every day,” his mother said. Waiting for the school bus took too long, so Nick took a special bus that pulled right up to the house.

Trips to the grocery store were timed. Organized soccer and baseball were out of the question. So was recess.

Ness Elementary staff developed a lottery, so Nick spent breaks playing in the gym with one or two “winners.”

His parents, and brothers Tyler and Luke, turned their large living room into a romper room with the shades drawn. It was always OK to kick a ball in their house.

But growing up fully dressed was hot and bothersome.

“I wore long pants even when it was 90,” Nick said. He also wore masks, sunglasses and dark colors everywhere. White clothing was cooler but let more of the dangerous rays penetrate.

He watched his brothers’ soccer games from a pup tent his parents toted along.

At his grandparents’ cabin on Priest Lake, he splashed only in the covered boat slip, always dressed, wearing Big Reds cotton garden gloves: “All different colors, and none of them matched,” said Tyler, 15.

One Halloween the three brothers dressed as Ninja turtles, but Nick’s costume was what he wore every day. As he grew, his parents feared the experience would turn him inward. It didn’t.

“Nick could go out on a playground completely covered up and make friends,” said his father, Mark Roberts, a plumber with McClintock and Turk. “These kids had no idea if he was a boy or girl, black or white, yet he would leave that field with friends.”

Still, it was hard to keep friends when he couldn’t play outside. He remembers just one boy who played with him indoors.

Nick’s parents divorced, and both remarried. The three boys divide their time between the homes of Lauri and Michael Frandsen and Sandi and Mark Roberts. The four parents know that Nick is a handful at school and believe it is in part due to never getting to go outside.

But gradually, he has begun to. First went the mask, then the gloves.

One day his mother came home and saw him lounging outside without a shirt. She braced for the blistering, but nothing happened.

They are optimistic that he has finally begun to outgrow the disorder, but cautiously so. His ears still blister, and scars mark his hands. They all get on him about his head sock (like soccer players wear) and sunscreen. His brothers will grab a hat and chase him down the street.

But for the first time, he spent the entire day July 4 tubing and swimming outside the boat slip at Priest Lake. He played in Hoopfest on the sunny side of the street.

And Friday, he and the Frandsens left for Lincoln City, Ore.

There is a place in America, deep in the national psyche, that remains our image of childhood. It is a beach in midsummer, golden and wet, and of boys running and jumping in the spray.

“Some people dream of seeing their children graduate or getting married. My dream has been to see him muddy, dripping wet, to watch him play,” says his mother.

“I want to collect shells,” he says. In a hat, with Pre-Sun 45 sprayed on every 20 minutes and wearing a T-shirt, as always.

But for the first time, he’ll be in short sleeves and shorts. Maybe even barefoot. A child of the darkness, moving into the light.

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