Our daughter's face is wasting away

[Anonymous]

Our daughter has a disease called Parry Romberg Syndrome. We have just gone public about her. We needed help. It is very rare and most doctors have never heard of it! I hope this will be encouraging to all people dealing with kids who have facial differences. The 225 messages to Kelley and our family would apply to many of you too! Please feel free to contact me. I'm Kelley's mom. Love, Donna
Her front page article: <a href="http://denver.rockymountainnews.com/kelley/">http://denver.rockymountainnews.com/kelley/</a> An editorial: <a href="http://cfapp.rockymountainnews.com/kelley/messages.cfm">http://cfapp.rockymountainnews.com/kelley/messages.cfm</a> Over 225 messages to us via message board... <a href="http://cfapp.rockymountainnews.com/kelley/messages.cfm">http://cfapp.rockymountainnews.com/kelley/messages.cfm</a>
Sincerely, Donna Sperry (Kelley's mom)

[Trisha]

Dear Donna, I read the article that you provided the link to. Unfortunately I know nothing about Parry Romberg Syndrome. I sincerely hope you find more answers. I will pass along your story to my surgeon, Dr. Cutting.


What an inspiring daughter you have! With only knowing the small bit that I read, I want to suggest that counseling may be a benefit. I could relate heavily with hating my own face (and eventually all of me) when growing up, and it only got worse until I was in my mid-twenties. I was born with a bilateral cleft lip and palate, and have had 25+ surgeries for it. My parents did not believe in counseling back then, but fortunately brought me to great surgeons, dentist and speech therapist. If I had to say something important was missing, it would have been the counseling. In my own experience with this, it was way too much for a kid to handle. I don’t know how I was strong enough as a kid to get through my own stuff.


I wish you and your family the best of luck in getting through this, and hope that your daughter is not only strong, but will be self-accepting. She is a beauty too!