Work in the entertainment industry had all but completely halted and the particular segment of the business I was in was going to be slow to return. Zoom school was not working for either kid. In person school was going to feel too risky. So, with no education plans, no employment plans, and no social plans, we did the only thing that felt safe at the time. We bought an RV.
How do Rett Symptoms really impact our daughter?
I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading
My heart broke, but not for Magnolia
Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark Continue Reading
A seizure rollercoaster ride….
I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome A syndrome where everyone is Continue Reading
This past week, Maggie needed to dress up for school as her hero or a hero. When I found out, I asked her, do you want to dress up as Elsa or Merida, we have both costumes and they are Continue Reading
Being her voice
I read a news story recently that frustrated me to no end. It reminded me how far we have to go to get to real understanding of patient rights and saddened me for this family. A girl, living with Rett 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
Celebrity Campaign for Rett Syndrome!!!! #reverserett
[embedyt] https://www.youtube.com/watch?v=6QRk1fgEuRU[/embedyt] 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 Continue Reading
Reverse Rett LA
On October 13th, the Rett Syndrome Research Trust’s largest annual fundraiser will take place in Los Angeles. Jenny and I are co-chairing this year in addition to chairing the auction. We have set a goal of raising $1MM at this Continue Reading
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 Continue Reading