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 Continue Reading
Seizures, part 2….
Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. Continue Reading
We are on our way to CHLA today for a 48 hour video EEG. Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed Continue Reading
We leave for NYC next week and couldn’t be more excited. Well, we could be a little more excited. Maggie came down with a cold and we are walking on pins and needles waiting to see what happens. But fortunately, Continue Reading
Goodbye 2016, Hello 2017
Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown at Continue Reading
A two week journey in two parts. Part 1.
In Los Angeles, everything shuts down for the final two weeks of the year, as everyone escapes back to their family or goes on vacation. We’re fortunate to be able to do both most years. We typically spend Christmas in Continue Reading
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew Continue Reading
The implications of 5
Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading
I wrote a poem for Rett Syndrome Awareness…
When I look at her I don’t see her arms flapping. I see a little girl trying to fly. When I look at her I don’t see a girl struggling to breathe I see a girl who takes my breath 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