Last week, Jenny and I wrapped up our formal fundraising efforts for this year. Our friend, Jaime Morgenstern, who runs Gilt City events gives us a booth and donates some money to RSRT. They also donate a bunch of liquor Continue Reading
Breathe
One of the symptoms of Rett Syndrome is a difficulty breathing. Maggie hasn’t always had this problem, though recently she’s developed it. And it’s a hard one to watch. We just have to watch her struggle and gasp for air Continue Reading
Cooking with Maggie
We’ve talked a lot about hand over hand exercises on this blog and have assumed that most people reading this go “oh yeah, I know what that means, I do it all the time.” But I realize I wouldn’t have Continue Reading
The implications of 5
Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading
The Hope for Hannah and Gaby Gala Auction Site
I’ve spent the last two months, more or less, full time working as the Auction chair for this event. It is the largest fundraiser in the world for Rett Syndrome research and we are very proud to be such a Continue Reading
#Team Magnolia
Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for Continue Reading
I wrote a poem for Rett Syndrome Awareness…
When I look at her I don’t see her arms flapping. I see a little girl trying to fly. When I look at her I don’t see a girl struggling to breathe I see a girl who takes my breath Continue Reading
Allergies
Rett is an ever changing mystery – and it’s one we’re constantly trying to solve. Any little thing could be a clue to helping her with some of her symptoms. We obsess over it – just trying to do everything Continue Reading
The Chair
She’s been doing so well for so long that I was starting to feel like we had a handle on it and that we weren’t going to need to adapt her life around Rett Syndrome. I was starting to feel Continue Reading
CBS News
After I posted the video of Maggie talking on her Tobii, a reporter from CBS Local News reached out. She was fascinated by the technology, and after we shared our story, she was relieved, as are we, that we could Continue Reading
