Nicky’s Life Part 36

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 so much fun. More of Nicky’s story in the book… Thank you so much for your support!! http://www.butterflychildamothersjourney.com/?page_id=19 Love & Light,   Post Views: 19

Nicky’s Life Part 13

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 and understand EB fully. In this picture… while all the other kids rode the horses, Nicky was too afraid to do that, so he just rode on the little carriage behind it. He loved it! More of Nicky’s storyRead More

A Grateful EB Mom

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 lives of children in great pain every day, it’s beyond humbling. The Children Skin Disease foundation is doing amazing things and I will forever be grateful to the Tenconis, especially Francesca, who make it happen every year. THANK YOU!Read More

Camp Wonder parent’s trip to Muir Woods (CA)

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 at a reasonable distance, Mr. Bill takes us to Muir Woods, an amazing place I never knew existed! Afterwards we had a great lunch at the Marina and even went to take some amazing photos of the Golden GateRead More