They tell me that Rett Syndrome is progressive. They tell me it’s inconsistent. They tell me it might get worse, but it might not. She might have seizures, she might not. She might need a wheelchair she might not. The uncertainty is infuriating. Every time something happens, it’s impossible to know if it’s an injury,[…]
Thanks so much to the Huffington Post for sharing our story. http://www.huffingtonpost.com/entry/dad-fights-for-cure-for-his-daughters-disorder-in-emotional-video_us_573b5ac5e4b0646cbeeb08cc? Maggie and I made a video to thank Mark Zuckerberg for responding. We will try to keep dialogue open with the Chan Zuckerberg Institute, but now we will also have to find new billionaires to attract to the cause.
Dear Mark and Priscilla, It feels odd to be writing to you in this way. Then again, I can’t imagine a better forum to connect with you then the one you dreamed up in your room when you were in college. First and foremost, warmest congratulations on the birth of your daughter, Maxima. I know[…]