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[…]

Last Day of Pre-K

With Betsy Devos’ hearing making national headlines this week, I thought it’d be helpful to share why a federal focus on special needs education is so important to us.  Maggie “graduated” from Pre-k last summer.  She wasn’t there.  But she graduated.  In fact, she hadn’t been in school since the beginning of April, but she[…]