A MESSAGE FROM JAY SPERRY

Kelley was diagnosed with Parry Romberg Syndrome in August of 2000. Our first question was, Is it life threatening? We felt unimaginable relief when told the disease was not terminal.

Our next questions would be asked hundreds, if not thousands, of times by us, family, friends, and many people we met. What causes the disease? We don’t know what causes Parry Romberg. Is there a cure? No there is no cure, but some of the symptoms can be treated. What happens when you have Parry Romberg Syndrome? You can have facial atrophy, atrophy of the brain, atrophy of the affected side of the body, seizures, migraines, strokes, and vitiglio. A person can have one symptom or all the symptoms with the symptoms varying from very mild to severe. Does the disease ever stop progressing? It can stop, but not all the time.

We struggled for a long time trying to wrap our minds around these concepts, trying very hard to accept and move forward. We tried to grasp all the possible ramifications, but the unknowns of this disease caused feelings of helplessness, frustration, anger, sadness, and worry. I can only imagine how Kelley and others with Parry Romberg feel!

There are no magic ways to overcome the effects of Parry Romberg, especially for those afflicted. I hold a thought a friend gave me early after the diagnosis: Do everything you can to help Kelley because in the end, no matter the outcome, you did your best and this is what Kelley will remember. We took this approach.

Did we make mistakes? Yes! It's easy to become consumed and neglect other responsibilities and relationships. Do we have regrets? Yes! But by process of elimination we've learned to divide responsibilities. Donna used her strengths and I used mine.

This disease is not the worst thing that could happen to a person, but it is something I definitely did not want my daughter to have. We are going on with our lives in a positive manner and that, in the end, is our most important choice.

Jay
Kell Bell’s dad