What would you ask for?
We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading
Back to school on April 11
We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year. She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain Continue Reading
Through her eyes
https://youtu.be/PJuUpDefrhY I wanted to put a go pro on her and show what it’s like to be Maggie. This was supposed to be a follow up to the communication video from last week. It was supposed to show how engaged Continue Reading
Why the #hopeisreal…
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 Continue Reading
Cooking with Maggie
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 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
