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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 satin ballet shoes with ribbons 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 satin ballet shoes with ribbons 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.
“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 satin ballet shoes with ribbons 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..
“The doctor said, ‘You can’t do that. It’s too close to the equator,'” Pam said. They moved to Ladera Ranch in 2001. They go to the park or swimming or to the mall after dark. “Let’s make her life as good as can be,” Pam said. 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 satin ballet shoes with ribbons 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..