Taking a closer look at how the new grading system would work.
Southern Californian has disease that makes her allergic to the sun; family, friends aim to make senior year memorable
She stood under the football stadium lights, in the spotlight, in the light of flashing cameras, in the light of a thousand smiles, and somehow she outshined all that.
On this night, the girl who is not allowed to feel the warmth of the sun on her skin, owned the light.
As she waited to hear if she would be named homecoming queen, the disease that had taken so much from her seemed so small. She wasn't a girl wearing long gloves and a plastic hood. She was a princess hoping for a coronation.
The stadium announcer said, “And now, our 2017 Dana Hills homecoming queen is …” And he paused, as if to allow prayers one last second to reach their destination.
The stadium fell so silent you could hear everyone wishing for the same thing.
In 45 years of homecoming nights at Dana Hills High School, they had never had one like this.
Have you ever truly considered the sunset?
Riley McCoy has. When you think about it, the sun doesn't set at all. It doesn't drop or recede. The sun is fixed and relentless to the point that, every evening, the Earth turns away.
Riley is 17, trying her best to have a typical senior year in high school. Her life is too dependent on the bend of the horizon, the reach of ultraviolet rays and the danger of the sun.
Every day, Riley, who spent her toddler years in the Bay Area, waits as the Earth rotates east. She gazes through tinted windows at the unyielding ball of fire that could kill her if her timing isn't right. She has never been allowed to see a sunset without some sort of shield or felt the sun's warmth on her skin.
She is afraid of untinted windows.
She lives her daylight hours indoors, longing for the night.
Riley goes to school in a floppy blue hat with a UV-protective shield her parents got from NASA that extends from her face to her chest. She wears long, beige gloves given to her by her grandmother. Her parents chose Dana Hills because it is one of the rare campuses in Southern California where enough classrooms open to hallways rather than to the expanse of the sky.
Too many days after school, Riley begins a countdown, asking her parents, “Is it safe yet?” Her mother carries a gauge to measure the light.
Finally, Pam McCoy, Riley's mother, will announce, “It's safe outside.”
“She screams ‘REALLY?' in a giddy, happy voice,” Pam said. “Every time.”
Riley's fear fades with the dying of the light. She is safe in the beams of the moon.
On Friday at halftime of the Dana Hills football game against Santa Monica, safely after sunset, Riley McCoy stepped onto the field in a royal blue gown she chose to match her school's colors. She was escorted by her father, Mike. She was one of six finalists for homecoming queen out of more than 200 senior girls whose names appeared on the initial ballot.
The sun could not stop her.
When Riley stepped into the spotlight, her family, friends, teachers, neighbors, doctors and anyone else who has helped this sweet girl live with dignity had trouble holding back their emotions.
“This is my night,” Riley said.
“I will cry a million happy tears,” Pam said.
Riley was born with a rare genetic disorder called xeroderma pigmentosum (XP). Any exposure of her skin to the ultraviolet rays of the sun — even a sliver of light through an open door or a cracked window — could result in a blistering burn, potential malignant cancer, internal organ damage and, eventually, death. Her DNA does not contain the antibody to repair the damage caused by cyclobutane dimers and 6-4 photo-products that invade skin inside UV rays, said Debby Tamura, a research nurse at the National Institutes of Health.
Tamura has known Riley for more than 10 years. When she was little, Riley was walking through the NIH offices in Bethesda, Maryland, when Tamura noticed she was shying away from the windows.
“Mr. Sun is not my friend,” Riley said.
When Tamura gives speeches to raise awareness for XP, the title of her talk is “Mr. Sun Is Not My Friend.”
As if XP wasn't horrible enough, Tamura said, Riley has the “D” strain of the disease, meaning she also has neurological degeneration. Her DNA does not have the antibody to repair oxidation in her brain. In other words, her brain cells are dying, and she is losing cognitive abilities as if she were rapidly aging. Her parents estimate that she has lost 20 points off her I.Q. since her freshman year of high school.
Riley read “One Flew Over the Cuckoo's Nest” last year, but she may not have fully understood what happened in the book. She was crushed when she watched the movie with her parents. She had trouble watching the blatant meanness of Nurse Rached, which led to tragic consequences for R.P. McMurphy.
“She got really upset,” Pam said. “It's very interesting how some difficult, abstract things she understands. And others she doesn't.”
There are about 300 Americans currently living with XP, and the chances of being born in this country with the disease are one in a million. There are fewer than 100 living with XPD.
People with XPD rarely live through their 20s.
Riley's parents dreaded sending her to high school, where they feared bullies would destroy their sheltered little girl.
The opposite has happened.
The McCoys have found themselves floored so many times as they've orchestrated Riley's high school experience. From the Dana Hills administrators who have moved events such as Friday's homecoming pep rally indoors so Riley could attend, to friends who have tinted the windows of their homes so Riley can visit, to members of the “Best Buddies” program who have come to her house for midnight movies or pool parties, everyone, it seems, has pitched in to help.
“What those kids have done to help Riley has restored my faith in the younger generation,” said Don Soderberg, Riley's grandfather.
One of Riley's closest friends is last year's homecoming king, Jimmy Quick, a freshman at Belmont University in Nashville.
Quick remembers the first time he saw Riley. They were both trying out for the school's dance program. Riley, who has some coordination difficulties, danced in the tryout without assistance.
“I thought she was super brave,” Quick said. “My own struggles seem so trivial.”
Quick and other friends wait until after dark to take Riley to Disneyland. In the world of her highschool, she is not a charity case. She is a bit of a social butterfly, bouncing from friend to friend during the day, smiling and laughing.
“Riley has this really awesome outlook on everything,” Quick said. “I've never seen her sad. I don't know how she does it with the obstacles that she's up against. I don't have the strength for that.”
Friends and neighbors have pitched in throughout her life. Matt Darienzo, who owns a window-tinting company and lived across the street from the McCoys, installed free tinting at Oso Grande Elementary School where Riley attended.
Ann Marie Jennison, who helped organize three “Walk by the Light of the Moon” nights and raised more than $300,000 for XP research, has been a friend of the McCoy family for 13 years.
Being nominated for homecoming queen “is the top of the mountain that Riley has been climbing her whole life,” Jennison said. “Her parents raised her to be pure and kind and a beautiful human being. She exudes pure kindness.”
“In reality, they are blessed to have Riley as a friend,” Jennison said. “These kids have had to think about things outside themselves because of Riley. She has the best heart and soul.”
The sun has severely burned Riley twice.
The first time happened when she was 6 days old in March 2000. Carol Soderberg, Riley's grandmother, took her outside for a walk in a covered bassinet. Riley wouldn't stop crying, so Carol took her home. Riley was in the sun only a few minutes.
Riley's skin didn't blister until the next day. She looked like someone had rubbed her face with a cheese grater. A doctor told Pam it was the worst sunburn she had ever seen. The doctor didn't think to check for genetic disorders.
When Riley was about 6 weeks old, Pam took her to the park. It was an overcast day, and it began to rain, so they had to leave after only a few minutes.
“When she woke up the next day, she had blisters all over her face,” Pam said. “I was horrified. It looked like we had put a Bunsen burner on her face. She looked like Freddy Krueger.”
Pam refused to take Riley to the hospital, thinking the doctor would blame her. She thought her baby with the strange burns would get taken away. She made Mike promise not to tell anyone.
Mike broke the promise, told his mother and helped save his daughter's life. His mother called Mike's aunt, who had two children with a rare skin disease. And that's the first time the McCoys heard they had xeroderma pigmentosum in their family. One of Mike's cousins had died, and the other was still alive.
XPD is passed genetically, so it must be present in the DNA of both the father and mother.
Pam and Mike McCoy were set up on a date by friends when they were both living in Newport Beach in their early 20s. They were married in 1998. Their pairing is so rare that the doctor who diagnosed Riley asked her parents if there was any chance they had come from the same family tree. They had not. When two carriers marry, there is a 75 percent chance their child won't have XPD.
Riley was part of the other 25 percent.
Their second daughter, Kate, does not have XP.
The McCoys lived in Greenbrae when Riley was diagnosed. Pam had a career in pharmaceutical sales and Mike was doing well in finance.
They faced a difficult decision. Where do you go to avoid the sun? Do you move to Iceland, where some winter days only have four to five hours of sun? Do you move to Juneau, Alaska, the least sunny city in America?
They chose Southern California because of the temperature at night. In Southern California, you can go to the park and play in the moonlight without freezing. They wanted to be close to Pam's parents.
They moved to Ladera Ranch in 2001.
They go to the park or swimming or to the mall after dark.
There have been several scary moments. When Riley was a toddler, she visited a friend's house and followed their dog outside unprotected. When a cop pulled over Pam in her car, she lowered her window and the sun hit Riley for just an instant. Riley tripped and her NASA shield fell off. So far, she has avoided the most severe burns.
She applies sunscreen daily on her face, neck and upper chest as an extra layer of protection.
As Riley became aware of her situation, she realized how different her life is. Recently, she asked if she could join Instagram, like so many other kids in her school. Her parents hesitated, then said yes.
When one of her “Best Buddies” posted a selfie at the beach in a bikini with her arm around another girl she called her best friend, Riley commented that she thought SHE was her best friend.
Riley is fun and kind and self-conscious — just like other teenage girls.
“There are down days when she says, ‘Why me?'” Mike said.
Pam tells her, “I'm sorry, this really sucks.”
Riley follows up with a question: “Did God give this to me?”
“God has given you the ability to get through it,” Pam answers.
The McCoys are Catholics. They don't go to church as much as they once did. And they don't always agree about God's place in Riley's story.
“My faith has dwindled a little,” Mike said. “I just try to keep my head down and go day by day.”
Pam sees it differently. “I see blessings everywhere,” Pam said.
Through the “Make-A-Wish” Foundation, Riley was given the opportunity to choose any dream. She considered asking if she could be a homecoming queen. Her friend, Quick, told her she didn't need to use up her wish on that. She would probably be voted queen without asking.
She chose a trip to Italy as her Make-A-Wish dream.
“It's a big honor,” Riley said. “It's a lady who represents the school.”
Here's the thing about Riley McCoy: She voted for someone else.
By the time the stadium announcer paused, Pam already was crying.
“And now, our 2017 Dana Hills homecoming queen is … Riley McCoy,” the announcer said.
She raced into the arms of Quick, who had surprised Riley by flying in from Nashville. He gave her a bouquet of roses and placed a tiara on her head.
Mike tried to hold in his emotions, and he failed.
It seemed that the only person who wasn't crying was Riley.
“This is a dream come true,” she said.