Last week I wrote about the science and how far it’s progressed. This week I wanted to reflect on how Maggie has changed, how much she has accomplished, how Rett Syndrome continues to affect her and how she continues to push back. A year ago she was barely making any sounds at all. We started[…]
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 and wine for future Rett Syndrome events. It’s very generous and we’re grateful she thought[…]
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 and there’s nothing we can really do about it, that we know of. It’s neurological[…]
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 prior to needing a word to describe what it is we’re doing. You see, we[…]