Health professionals continually warn the public to take steps to guard against sunburn. We often hear the expression “one in a million.” The phrase and the warning truly pertain to Emma Little, age 9, of Roanoke County, Virginia. Emma has xeroderma pigmentosum (XP), along with 79 other children in the U.S.
Emma’s mother, Johanna Sweet, explained that Emma’s body cannot repair UV damage not only from ultraviolet sunlight but also from light bulbs. Johanna further explained to station WDBJ7 that XP is a rare disorder that affects one in a million individuals.
Johanna describes the precautions required for Emma that allow her to have a somewhat normal childhood and be able to play outdoors with other children. Johanna dresses Emma in two layers of UV-protective clothing, then a jacket and a hat that has a clear shield protecting her skin from UV light.
Emma says that she tries to ignore the questions and name-calling about her protective clothing, but it is not always easy.
XP Support
The XP family support group came to Johanna and Emma’s aid after she was diagnosed. The nationwide group, consisting of parents of children with XP, helped mother and daughter adjust to Emma’s new life.
Johanna agrees that the XP organization is essential because it helps families understand how a child or adult can live safely without being subjected to ultraviolet light. It is especially important because, initially, people feel that avoiding ultraviolet light is impossible.
Every two years, the XP organization holds a medical conference for parents and children. Johanna said that at the conference, parents can talk to doctors regarding new information, and the children can speak to other children with XP.
The XP Moonlight Ball
Johanna is especially grateful for the help given by the family support group. She is on its board and is planning an XP Moonlight Ball to be held at Roanoke College as a fundraising event for the XP organization.
Johanna has planned a silent auction, hors d’oeuvres, a multiple-course dinner, and dancing. Emma is the special guest for the night and is quite excited that her mother is buying a ‘fancy’ ball gown for her.
Johanna is hoping people will donate items for the silent auction. The group encourages the community to step forward and help XP families who often feel alone in their XP lives.
Johanna stressed that the money from the XP ball will be used to buy equipment and hats for new patients, as well as pay for their attendance at the medical conference.
Johanna said that her reason for holding the Moonlight Ball is to give back now that she feels she has completed her seven-year learning curve. She wants to help other families who have just received an XP diagnosis.
About XP, A Rare Genetic Disorder
Xeroderma pigmentosum causes hypersensitivity to UV light as well as neurological symptoms. Occasionally, problems will also occur in a patient’s eyes.
The disease usually begins in early childhood. It is caused by mutations that are inherited from the child’s parents. Currently, there is no cure for XP. However, treatment may lower the risk of skin cancer or other complications.
