By Sydney L. Murray firstname.lastname@example.org
May 27, 2014
A group of Eaton Middle School students are organizing a series of lemonade stands for the third year in a row for a friend afflicted with a complicated disorder.
Lucas Parks began raising money for the XP Family Support Group two summers ago in support of his friend, Cameron Bricker, who suffers from Xeroderma Pigmentosum. Those who have this disorder are extremely sensitive to ultraviolet light. Only about one in one million people in the United States are affected by XP.
The first summer, Lucas raised about $50. Last summer, with the help of classmates Julianna Chandler, Madyson Emrich and Natalie Beckett, the group raised about $275 for the XP Group. Lisa Chandler, whose daughter is involved with the stand, said the children hope to double the amount this year.
Chandler some of these kids already have some experience with children who have a disorder. She has a son with Attention Deficit Hyperactivity Disorder and she said Lucas has a brother with autism.
“He’s very sensitive to Cameron,” Chandler said. “She’s such a sweet little girl.”
Chandler said not many children with XP survive past the age of 18, so the more money that is raised, the more research that can be done.
“They really just chose XP because of Cameron,” Chandler said.
The organization helps families in a variety of ways, Chandler said, including buying them portable UV meters. These devices help a family know when an area has too high an amount of UV light, which would make it unsafe for their child.
Children with this disease need to be covered when outside and usually only have the opportunity to play at night, Chandler said.
“They’re literally completely covered head to toe,” Chandler said.
Chandler said the windows in her house are always open and she loves sunlight and doesn’t like to be in the dark, but emphasized that those with XP have to live in the dark and can’t do normal things other kids do, such as going to the pool.
Chandler said she hopes eventually a fundraiser can be organized at night so Cameron can also participate and the community can get to know her better.
“We would like her to be able to be involved with it,” she said.
She said the group has been advertising in the schools because they want everyone who can come to show up.
Chandler said Cameron’s family is happy her classmates are making an effort to help her.
“They were pleasantly surprised,” Chandler said. “They were very thrilled to have the kids do it.”
Julianna has been in class with Cameron since about first or second grade and said Cameron is a girl who loves everyone and gives everyone hugs.
Julianna said she feels bad for Cameron and said she hopes the lemonade stand will help to find a cure for the disorder.
They will try to organize a lemonade stand every day or every other day, Julianna said, with the help of their parents.
She said she hopes the group can raise $1,000. She said she wants to raise as much as she can to help find a cure for children affected by XP, especially Cameron.
“She’s just really nice,” Julianna said. “She never gets mad at anybody. She never doesn’t say hi to anybody.”
The first lemonade stand of the summer will take place from 3-6 p.m., June 4, at 608 Aukerman St.