Jenny had this idea about showing off Maggie as a strong woman, so we had our friend Eric Guttierez (fka Mav, fka the funky blessed) come over and take some photos. Here’s a picture from that day – this is Continue Reading
More FUNdraising
I produced a show last weekend called First Act to raise money for Rett Syndrome research. A bunch of comedians came and performed old dated jokes they don’t get to tell anymore. Basically, the thought was that with Rett Syndrome, girls Continue Reading
YouTube
Hello family and friends. I’m not sure you knew about this, but I’ve been keeping a video log of Maggie’s progress as well, a vlog if you will. I put up videos of amazing things she’s doing and talk about Continue Reading
Frozen
Frozen has been a bit of a touchstone for us. When it came out and little girls around the world flipped over it, Maggie didn’t care. She’s never been able to sit still for long enough to enjoy a movie and Continue Reading
Back to normal
For the last two months I’ve been back at work which is to say I haven’t been around that much for Maggie. I’ve missed dinners and breakfasts and therapies and school drop offs. I feel like she’s growing up so Continue Reading
FDA Update
Over the past couple of months we have been holding our breaths as results from the FDA trail of a drug formerly known as NNZ-2566 were coming out. This is the drug closest to market for Rett Syndrome and would Continue Reading
“Go Potty”
We had been potty training when Maggie started going through regression. We hadn’t made it to wearing panties but she was understanding the concept. After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Continue Reading
The waiting game
For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status. Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about Continue Reading
Swims with the fishes
For Maggie’s birthday in November, we wanted to get her a fish tank. The problem is presents are always difficult because it’s unlikely she gets excited about any present, and as a result, it’s hard for us to get excited about Continue Reading
New treatments on the horizon
A year before Maggie was diagnosed, there were no treatments for Rett Syndrome. Today the Rett Syndrome Research Trust announced they were funding two additional clinical trials, bringing the total to about six. Six is a massive number in comparison Continue Reading
