A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie. She’d be the 30th girl of 30 girls in the trial. Our emotions are all over the place. Continue Reading
October is Rett Awareness Month
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month? I had grandiose plans, but am Continue Reading
I dance because she can’t
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
First Day of School
There has been a lot of stress and anxiousness preparing for Maggie’s first day of school. Ours not hers. We kept telling Maggie that she was going to be going to school and it was going to be fun. She didn’t really care, but how could 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
