A MESSAGE FROM DONNA SPERRY
None of us would ever have chosen this for our daughters or sons. We’ve read about the horrors that some folks with Rombergs had as they were growing up: the endless doctor visits, the experimental surgeries, some successful, some not. The saddest of all were parents who failed to acknowledge that their child had a problem. Some kids grew up knowing that they were different and had no one to talk to about it.
With incredible support and resources from people on the Romberg’s Connection online support group, we knew that Kelley would never feel alone. And now, with the creation of the Parry Romberg Foundation made possible by loving family and friends in memory Kelley’s grandfather, we believe that some questions will be answered.
Jay and I are sometimes asked how we reacted when learning that our beautiful nine-year-old daughter had a rare disfiguring disease called Parry Romberg Syndrome. The diagnosis was a source of relief at first, learning that it had a name. As the reality set in, our hearts sank as we researched and found little information on etiology and treatment - and nothing about a cure. Images of bluish, sunken faces haunted us after surfing the Internet for clues for what to do next. At dozens of doctor visits we were told, “Wait. Do nothing." This disease would do its damage and we could try to “fix” it later, hoping that it might just burn out. It was not a death sentence for our daughter, but it felt like one.
We decided to become proactive. Newspapers and magazine journalists helped us spread the word about Rombergs. Within a few years, our family’s story was being read by 44 million people, in 36 different countries, in 19 different languages as the Reader's Digest article made its rounds. We’ve had TV producers contact us but have decided to wait until Kelley is older to tackle that one!
Our goals are clear:
- Educate both the public and the medical community.
- Seek out the latest possible safe treatments.
- Raise money through our foundation for research.
- Bring together families who have been touched with Rombergs through annual retreats.
My daughter is an inspiration to me every day and I’m so proud to be her mom. I’m thankful God gave me Kelley, just the way she is.
Thanks for visiting our website!
Donna
Kell’s mom
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