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

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