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“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 Dana Hills High, 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 grishko triumph pointe shoes 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.”. Jennison once heard Pam complimenting all the great students at Dana Hills High who have befriended Riley.

“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, grishko triumph pointe shoes 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 grishko triumph pointe shoes 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.

“We won the wrong lottery,” Mike said, Their second daughter, Kate, does not have XP, The McCoys lived in Greenbrae, a little north of San Francisco, 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 grishko triumph pointe shoes 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..



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