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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 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 grishko pointe shoes for wide feet 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 High 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, Sept. 15, at halftime of the Dana Hills football game, safely after sunset, Riley McCoy will step onto the field in a royal blue gown she chose to match her school’s colors. She will be escorted by her father, Mike, and find out if she will be named homecoming queen. She is one of six finalists out of more than 200 senior girls whose names appeared on the initial ballot.
The sun cannot stop her, When Riley takes the field, no matter what happens with the homecoming queen announcement, her family, friends, teachers, neighbors, doctors and anyone else who has helped this sweet girl live with dignity will have 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 grishko pointe shoes for wide feet 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 photoproducts 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 grishko pointe shoes for wide feet 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 1 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 High administrators who have moved events like 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 grishko pointe shoes for wide feet 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.”..