We try to do typical things with Maggie whenever we can. It’s important to give her the same kinds of experiences that typical kids would have. She deserves no less. That said, we are always nervous about putting her into uncomfortable situations and I’m not sure that ever goes away. We’re nervous we’re going to[…]
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.
I posted this picture a few weeks ago on Facebook – what felt like a lazy Sunday. This was at 9am. She fell asleep right after this for about two and a half hours. Somewhere in the middle of that nap I realized what it really was. Her head had fallen forward in her stroller and she was[…]