Rebekah's Story:

Sent: January 27, 2000

Hi, my name is Debi and I have a beautiful 10 year old daughter named Rebekah. Rebekah was showing signs of having NF at about 18 months old. She had a few cafe-au-lait spots that seemed to appear overnight. We were told by her pediatrician at the time that it was probably NF but could not be diagnosed by spots alone. She began developing small tumors under the surface of her skin about 4 years ago. It was then that she was finally given a firm diagnosis. She has since had two MRI screenings. No brain tumors, thank God!!

Rebekah has mild learning disabilities that are associated with NF. She has begun to get frequent headaches and also has a lot of stomache aches that sometimes result in vomiting. So far her pediatrician has not lead me to believe that these are related to NF. However, the more I read about this disorder, the more I believe that they are related.

Rebekah is a very happy girl. She is "friendly to a fault" and doesn't know a stranger. To look at her you would never know that she has NF. She is so darn cute!!! My problem is that I know it is very likely that she may begin to develop cosmetic if not more serious problems as she gets older. I have not explained to her yet about her disorder. I don't know how to bring it up in a way that a 10 yr. old will grasp. She knows that she has "spots" and a few "bumps" but doesn't know, nor has she asked, why. If any of you have advise as to how I should handle it please e-mail me .

Debi / Added May 2000