June 2008 – Nicky was 11 years old in this picture taken at Camp Wonder in Livermore (CA). I started taking Nicky to camp in 2003 when I was pregnant with Connor and we’ve gone every year since. Nicky told me the other day that he’ll go as long as they allow him, “it’s MY week” he told me. Surrounded by other EB kids and Doctors/Nurses and Counselors that are so incredibly caring, he feels safe and he has soRead More →

June 2003 – 6 year old Nicky went to Children’s Skin Disease Foundation/Camp Wonder for the first time and it completely changed his life. Even though Nicky is too old to be a camper now, they made him an honorary counselor, so he can still go. We are enormously thankful, more than we can ever say or even repay. It’s a time for Nicky to spend time with other EB kids and to be with people that truly care andRead More →

The word of the day might as well be ‘awareness’. Not only Nicky’s book was featured on a story on FoxPhilly, but a good friend told me how anytime he buys EB eggs he thinks of me! That was too funny. At any rate…  we got back from Camp Wonder  this past Saturday afternoon and the boys can’t stop talking about it. It was magical as always. To have a Camp sponsored by companies such as Cetaphil that enhances the livesRead More →

Every year the wonderful organizers of Camp Wonder send the parents to a trip to visit the local area of interest. We always look forward to these trips and Bill is such a gifted travel guide! Over the past few years, Bill has taken us to a trip to Napa… …a wonderful excursion in San Francisco… …an amazing trip to Monterey and Carmel… …and just as if we can’t think of where we could possibly go next that is atRead More →