A few months back I registered our family on the global genes project. www.globalgenesproject.org It is a site dedicated to those with rare diseases. I was hoping to find more Vici families from it. That didn't happen but I got this in the mail the other day. Its from a complete stranger. People donate bracelets to the project to give to parents and caregivers of a child with a rare disease to show their support. I thought it was very touching. There are so many good people in the world!
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