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
An Actual Conversation With Maggie
We got the Eye Gaze Computer!!! After a very hard fought battle with the district, they gave us the communication device Maggie needed. They wanted to help the whole time, there were just a lot of hoops we had to Continue Reading
When Laughter Fills The Room
It’s amazing how much about Rett Syndrome I can forget when Maggie’s in a giggly mood. Her laugh is literal music to my ears and it washes away all of the stress and pain of Rett Syndrome. Knowing that she’s Continue Reading
Diagnosis Anniversary
The anniversary of Maggie’s diagnosis was three weeks ago. I had been reading about other families and how that day is indelibly marked in their minds. Going through the day I didn’t think of it in the same way, in that Continue Reading
Happy New Year
We spent the last week in Texas with Maggie where she, once again, was showered with love and affection from her cousins and Texas family. Always nice to be in such a welcoming environment. We were scheduled to be in Continue Reading
Happy Holidays
In honor of the holidays, I thought I would share Maggie’s holiday program from school. I blurred out the other kids, because people get weird about that. This was a real treat for all of us. We didn’t even know Continue Reading
Art projects
Every time I pick up Maggie from school I inspect her art folder. She has extremely limited use of her hands and she can’t draw or paint at this point. We’re working on it, but she can’t. So, every time Continue Reading
