As the holidays roll around I realize it’s almost been a year since we got the diagnosis. We’ve gone through a lot of emotion this year and hardship and change, but still, it’s easy to find things to be thankful Continue Reading
NNZ trial press report released
This past week has been a roller coaster of emotions. Last Tuesday November 12,2014, two days after Maggie’s 4th birthday. Neuren Pharmaceuticals released the information regarding the NNZ trial for Rett Syndrome. This is a big deal. There are several Continue Reading
Maggie’s First Seizure
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 Continue Reading
Beauty Marks
Sorry to be overposting this week, but a lot is going on. Our good friends Kate and Joey from Mr. Kate, a lifestyle brand, are just uber creative and smart and savvy and good looking. And they’re launching a new Continue Reading
Maggie on the news
The news did a story on us back in August when we put out the video (bit.ly/magnoliashope). It airs Wednesday, November 12th, on KCal9 at 10:00 PM. If you’re not local, here’s the story: http://losangeles.cbslocal.com/2014/11/12/couple-determined-to-find-cure-for-daughters-rare-condition/ I’m not sure what we said at Continue Reading
Birthday Celebration
Last year we were on the east coast for Maggie’s birthday and didn’t really have the opportunity to do a big party. Plus at 3, would she really care? This year, after a lot of uncertainty, we decided to give Continue Reading
Halloween
We didn’t know how Halloween was going to go, this year. It’s really only the second time she would have been trick or treating since she’s been born. It was too hectic last year. And the year before we went, Continue Reading