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Riley McCoy, the Girl Who Can’t Go Out in the Sun, Steps Outside to Graduate
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Photo: photo: ocregister.com/Bill Alkofer, contributing photographer

Riley McCoy, the Girl Who Can’t Go Out in the Sun, Steps Outside to Graduate

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https://www.ocregister.com/2018/06/07/the-girl-who-cant-go-cant-go-out-in-the-sun-will-graduate-from-high-school-today-in-the-sun/

USA — June 7, 2018

Her classmates rose as she gingerly approached the stage to receive her graduation certificate.

And then, as if part of a wave, people in the bleachers started to rise. Teachers stood, security guards clapped, soon everyone watching at Dana Hills High was on their feet cheering for the girl who was making the longest walk of her life in the sun.

By some mix-up, no one said Riley McCoy’s name at the graduation ceremony on Thursday afternoon.

No one had to.

Everyone could see Riley, her beige astronaut-type helmet fighting off the rays of the sun.

She walked about 100 yards from the time she exited a golf cart, hugging and high-fiving classmates, across the stage and back into the cart, as the crowd in the football stadium gave her a four-minute standing ovation.

“She has taught everybody at this school what love really means,” said Ken Nedler, the director of student activities who served as her golf cart driver.

Riley’s mother, Pam, wiped away tears.

“It was amazing,” Pam McCoy said. “I was so happy to see a smile on her face.”

Riley interrupted, “Mom, why do you always cry?”

Pam wasn’t the only one. Mike, Riley’s father, could barely get a sentence out.

“Unbelievable,” he said.

Not this time

In her short life, the sun had always won.

But not on graduation day.

Riley McCoy won on Thursday. Just this once.

And she, alone – not her parents, not school administrators – made it happen.

Riley was born with a disease called xeroderma pigmentosum (XP). Her skin cannot repair itself after exposure to the sun’s ultraviolet rays. The slightest sliver of sunlight could trigger, at best, horrible burns, or, at worst, fatal skin cancer. She also has the “D” strain of the disease, which means her brain cells are degenerating more rapidly than is typical.

She has lost hearing, coordination and I.Q. points since she started high school four years ago. Her prognosis is not good. About 100 people in the United States have XPD, and their life spans usually don’t stretch past their 20s.

That Riley is finishing high school is a minor miracle, her father said.

“When she was little, we didn’t know if she would ever be able to go to school at all,” Mike said. “We’re here (at the end of the school year), and we don’t know how we got here. Every event is emotional with Riley. You appreciate whatever comes along.”

Her senior year has been so dramatic. She was chosen homecoming queen, went to her first-ever dance (Winter Formal) with a boy, sang in the school play and had surgery to remove a lump on her breast (it turned out to be benign). Last month, she went to the senior prom with her longtime friend Jimmy Quick, who was the same former student (he’s now at Belmont University in Nashville) who put the homecoming queen’s tiara on her head.

Riley McCoy, the Girl Who Can’t Go Out in the Sun, Steps Outside to Graduate

Riley may be the most well-known student at Dana Hills. After the Southern California News Group began chronicling her life, news organizations from around the world have featured her. Through it all, she has remained her bubbly self, trying to be part of anything and everything typical high school seniors do.

And it has worked.

Behind the scenes, her mother has been meticulously working with school officials to give Riley a special graduation ceremony to avoid being in the sun.

About six weeks ago, Riley did something she never does. She defied her mother.

She blew up that plan.

Not the time to be special

Last August, the first few minutes of a conversation about Riley (after the explanation of what is XP?) concerned graduation. Pam had been ruminating about that ceremony for almost two years. How could Riley participate in a ceremony that is designed to be held in the football stadium in the sun?

If you search YouTube for “Dana Hills High School graduation,” you will find videos of sunglassed seniors (2015) skateboarding or razor scootering (2016) to their ceremony. The sun is as much a part of that final day as the diploma.

Pam, with the help of school administrators, had to overcome the problem of how to keep Riley out of the light. In the end, despite all Pam’s fretting, the solution was easy. Riley would graduate indoors.

This indoor plan went like this: During the “Senior Send-Off Rally,” one week before graduation, Riley would enter the gym, her name would be called, and she would walk in front of predictably thunderous applause to receive her certificate of completion. Technically, she will not receive a diploma so she can continue receiving special education services from the school district for the next few years.

In that indoor plan, she would be immediately embraced by friends and family. They could pose for pictures without even a thought of the sun.

In that plan, she would graduate alone. That’s how Pam McCoy described it last August.

The plan was set.

“It sounded perfect,” Pam said.

She told Riley: “You’ll be the only one. You’ll be special.”

Singing her song

While her mother was planning her graduation, Riley was writing a song.

18″ is the title. She wrote it with music teacher Kyara Kalb. The title has a double meaning. Riley turned 18 this year, and she was graduating with the class of 2018.

“It took a few weeks,” Kalb said. “And it was super, super fun.”

The lyrics include the lines:

The whole schoolchants my nameat the homecoming game,and to my surprisethe queen was me.

Her story broke nationwideabout the girl that stays inside,but that doesn’t changewho she was meant to be.

I don’t want it to end.I want to make memories.I want to see them againbefore it’s time to leave.

When she played the song for her mother, Pam started crying.

“It sounds like a Taylor Swift song,” Pam said. “These are happy tears.”

Being the same

Riley McCoy has never been able to participate in big events. Usually, parades and festivals and outings (like the Special Olympics or Disney Day) are held in the sun. When she and her classmates went to New York City for a school excursion, Riley spent most of the daytime hours in her hotel room staying away from the windows.

“We don’t do events,” Pam McCoy said.

Six weeks ago, Riley approached her mother and told her that graduation would be different.

“No,” Riley said. “I want to do it with my friends.”

This time, she wasn’t going to shy away. She didn’t want a ceremony indoors where she would be the center of attention.

This time, just once, she wanted to be like everyone else. She wanted to walk with her classmates.

Pam, being open-minded, heard Riley’s request, and wanted to make that happen for her daughter.

“She wanted to be the same,” Pam said.

She couldn’t figure out how.

Then Pam heard about a website called enfantsdelalune.org (Children of the Moon). The website features French children with XP, and in the photos, many of them are wearing bubble-faced hoods with a small air-conditioning unit attached to the chest. The masks are tinted and UV-safe. Developed by scientists at the University of Poitiers, the hoods are called PPEs, or Personal Protective Equipment.

A United States-based organization, XP Family Support Group, bought one of the PPEs and loaned it to Riley McCoy for her graduation.

Riley McCoy, the Girl Who Can’t Go Out in the Sun, Steps Outside to Graduate

The PPE arrived at Riley’s home in Ladera Ranch on June 1.

The only debate in the McCoy house was what Riley would wear beneath her graduation gown.

Her father wanted her to wear gloves, a long-sleeve shirt, long pants and thick socks.

“We still have to think about safety,” Mike said, raising the possibility of an unexpected wind gust or that Riley could fall and expose herself.

Riley’s comment: “I want to wear a dress.”

They both won. On Thursday, Riley wore a short blue dress that she had worn to the Homecoming Dance. And she wore black leggings, black socks, a long-sleeve shirt and purple gloves.

With technology the McCoys never dreamed of, Riley walked with her classmates.

Her name was supposed to be called last.

The cheering was so loud, no one would have heard it anyway.

Author: The Orange County Register