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Rare illness inspires parents to organize, help others cope

John C. Ensslin, Rocky Mountain News

Published April 24, 2007 at midnight

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WINDSOR - Jay and Donna Sperry got two pieces of good news recently about their daughter Kelley and her struggle with a rare disease that has disfigured the right side of her face.

Last week, the couple learned that the Internal Revenue Service had approved their yearlong quest for nonprofit status for a foundation to fund research into Parry Romberg syndrome and to help other families cope with the medical and psychological impacts of the disease.

And in June, Kelley will be able to undergo plastic surgery that doctors hope will help reverse some of damage that has left her nose crooked and her teeth loose.

Surgery is possible only because the progress of the disease has slowed and Kelley's skull has become fully formed, her father explained Monday.

Several strokes that have reduced the vision in Kelley's right eye to something like a splotchy spyglass also have abated.

After suffering seven strokes in her first 13 years of life, Kelley, now 15, has suffered only one additional stroke since then and that was 18 months ago.

The Rocky Mountain News first wrote about Kelley in an August 2001 special section titled "Beyond the Mirror," which chronicled the then 10-year-old girl's struggle with the syndrome about a year after it had been diagnosed.

Today, she is a high school sophomore, with the usual preoccupations: chatting on a cell phone and checking on her friends through the popular Web site MySpace.com. Last year, she also served as manager for the boy's basketball team.

She is not as worried as she once was about the surgery.

"It definitely was one of those things I didn't want to do at first," she said. "But as I got older, I looked into it and definitely decided to do it."

Kelley still suffers from painful headaches, as she has for most of her young life. Sometimes, she has to take medication so strong that it knocks her out for the day, her father said.

"She's about as brave as anybody can be," Jay Sperry said. "She'll have a headache pretty much every day. She'll just lay on the couch and not even be able to watch a movie."

"And then she'll get up and put her backpack on and, going out the door, she has a smile on her face and she's happy to see her friends."

The Sperrys are also happy to have launched the Parry Romberg Foundation. The idea for the nonprofit stemmed from a conversation Sperry and his wife had several years ago with a geneticist who helped with Kelley's case.

Then, about 16 months ago, the couple started seriously kicking around the idea. What helped make the foundation a reality were contributions that Donna's late father, Wayne MacVeagh, helped raise in the months before he died.

"My dad has spent hours and hours working on this," Kelley said. "I'm fortunate to have parents who are willing to take on something like this."

Building a new foundation

• The Parry-Romberg Foundation has set up a Web site, parryromberg foundation.org. Donations can be sent by check to Parry-Romberg Foundation, c/o US Bank, 1520 Main St., Windsor, CO 80550.

or 303-954-5291