Why does “advocacy” feel like a polite word for “fight”?
I felt like you were reading my mind when I was reading your post. I was just discussed in the New York Times Magazine because of my “advocacy” for my little girl that has global developmental delays. I can relate to you on every level. We had the opportunity to be a part of a new program at the National Institutes of Health called the Undiagnosed Diseases Program. My daughter has seen more doctors and specialist to try and figure out what is causing her not to crawl, walk, talk, etc. They asked if a NY Times reporter could follow us for the week we were there because she was writing an article on this new program. I thought that the fruits of my labor were finally going to pay off. The world was going to finally hear about Ragan’s situation and maybe someone might be able to help. Instead, this is the paragraph that was written about her in the 8 page article. “When the Undiagnosed Diseases Program’s first pediatric patient, 2 1/2-year-old Ragan Thursby of Florida, was admitted in Oct
