When Magnolia was 2. doctors would tell me, “It’s just a phase.” No matter what I would bring up to them. Of course with her, it wasn’t just a phase, it was Rett Syndrome. Actually for her it was a Continue Reading
Waves of crashing emotions
If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of Continue Reading
Diagnosis day – four years with Rett Syndrome
Maggie was diagnosed on 12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t Continue Reading
Rettland Foundation
When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having Continue Reading
Symptoms of Rett Syndrome | Share for Awareness
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. 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
