I’ve been trying to get a fundraiser of my own going since we found out about Maggie. The idea started out as a rather large scale collaboration between my old company, Jash, some old friends at Social Media Week, and Continue Reading
Playing Games
Finding a game that Maggie is willing to play has been impossible. I don’t even mean board games – that’s not even something that’s worth trying. Her attention would never hold and her hands wouldn’t let her manipulate any spinner Continue Reading
Just a normal Labor Day
We traveled to New York for the Labor Day weekend to see my parents and Maggie’s cousins, uncles and aunts for a weekend at my parents house, all under one roof. We did the same thing a few summers ago, and Continue Reading
Awareness for Rett
The video’s been shared a lot, so thank you for that. It’s at 110,000 views and it’s been pretty cool to see. (If you haven’t seen it yet – http://bit.ly/Magnoliashope.) I do wish we didn’t have to share it. I Continue Reading
Sharing the video is working
It made it into the Huffington Post – http://www.huffingtonpost.com/2014/08/11/rett-syndrome-video_n_5662406.html?1407771166 It just needs to continue to spread. Thanks for all your support. Here’s the link to the video so you can share it on Facebook, Twitter or whatever other social media Continue Reading
Share this video. Save Magnolia.
In December, our daughter, Magnolia was diagnosed with Rett Syndrome which is a rare neurological disorder. Because of Rett, scoliosis, seizures, feeding tube surgery, loss of mobility, loss of useful hand control and an inability to talk are all things she Continue Reading
Hand over hand battle
For the longest time it has felt like we were losing the battle with hand function. Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis. We spend most of everyday, Continue Reading
The Houston Report
This trip to Houston was a little different than the last one. At the last one we were nervous and everything turned out as good as could be expected. This time we weren’t nervous and we didn’t feel like it Continue Reading
Back to Houston
After a really great and relaxing week spent with family, swimming every day and getting eaten alive by mosquitos, we’re going back to Texas Children’s Hospital in Houston today – the mecca for Rett research. We’re going to see Maggie’s Continue Reading
Playing With Others
It’s been a regular struggle to get her to play with other kids. When she was younger, before the regression, she would play near them, but not necessarily with them. And when she started tossing sand out of the sand Continue Reading
