Girl with rare illness benefits from generosity of community
Monday, June 20, 2005
Child with XP will have a better quality of life thanks to caring individuals.
People in the community are genuinely concerned for Graycen Beardslee, a 2-year-old girl from Blodgett diagnosed almost a year ago with xeroderma pigmentosum. The genetic disorder, with no known cure, means she is extremely sensitive to the sun's ultraviolet rays. Exposure to the sun can result in skin cancer, hearing loss, eye cancer, damage to the corneas and loss of motor skills.
She has already had a few pre-cancerous blotches removed, received neurological and baseline testing and, particularly noteworthy, opened the hearts of community members with a sincere interest in helping children with XP and similar diseases live their lives as normally as possible.
A benefit for the toddler was held at the New Hamburg Parish Center in January, raising $2,500 for a special protective suit. Graycen wears it when she exits her car to the day care or participates in other necessary routines while the sun's rays may put her at risk.
Graycen's mom, Kim Beardslee, obtained the suit from The Sarah Moody Foundation, a partner with NASA using technology to help XP children worldwide reclaim their childhood with UV-protective clothing, environmental assessments and other products that assist such children in leading normal lives.
Kim Beardslee would like her daughter to be just like any other child. She said. "I'm not going to keep her in this house all the time. We just wait till the sun sets."
XP, afflicting more than 1,000 children worldwide, results from an inability to repair DNA damage caused by sun exposure. The damage usually leads to growth of cancerous cells and early death. Without assistance, many children do not live past their 14th birthday.
Early on, Kim Beardslee got in touch with the XP Foundation, founded by John Hansen in 2000 with his own resources.
The Ohio businessman serves as executive director of the foundation whose mission includes finding a cure and developing treatment improvements.
For the Beardslee family, living with butcher paper and black plastic bags on their windows ended in April when Hansen made arrangements with Stan Pealer of Solar Control Window Tinting in Cape Girardeau to install CP Film. The family home, vehicles and Graycen's day care were offered to be tinted at no charge. The value of the donated film, which screens 99.9 percent of the UV light, and installation totalled $1,500.
In the meantime, the Early Learning Center Inc. keeps the blinds closed to protect Graycen from UV rays. Kim used a device obtained from Hansen for checking the rooms Graycen is in and the staff doesn't allow her to be near the windows for prolonged periods of time. Bertrand-McIntosh said the protective suit allows Graycen to go out between 8 and 10 a.m.; otherwise she stays in with the cook or another teacher.
The Beardslees, who now live in Blodgett, tested lighting in their new home and there was only one light in the entire house that gave off a small amount of UV light.
Kim said, "When something like this happens to you it changes your outlook on life and people in general." Impressed with all the help received, she was also pleased that Pealer and Hansen waited until they were ready for installation of the film in their new home.