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