Soccer season success! Buddy included….

Warning! Cute post alert!  Maggie played soccer and had the time of her life. We became a soccer family and it really brightened up our Saturdays. To be able to go to the soccer fields and have Maggie play and be incorporated into a game that AJ played, and almost all of Maggie’s cousins play,[…]

Celebrity Campaign for Rett Syndrome!!!! #reverserett

Today, a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman, Casey Wilson, Paul Scheer, Billy Eichner, Kristen Schaal, June Diane Raphael and Nick Offerman participated in a PSA video and many more will be part of a social media campaign.[…]

Return to Disney

My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do with Magnolia, again. The last time we went to Disney, was the day after Magnolia’s diagnosis.[…]

It’s not if, its when…

The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I[…]

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 back her strength, balance and walking ability, being at home has allowed her to focus[…]