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
The summary of Maggie in 2015
Last week I wrote about the science and how far it’s progressed. This week I wanted to reflect on how Maggie has changed, how much she has accomplished, how Rett Syndrome continues to affect her and how she continues to Continue Reading
Breathe
One of the symptoms of Rett Syndrome is a difficulty breathing. Maggie hasn’t always had this problem, though recently she’s developed it. And it’s a hard one to watch. We just have to watch her struggle and gasp for air Continue Reading
13.1
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
Maggie is 5
I have so many emotions about Maggie turning 5 today. Excited, sad, amazed, proud, scared and blessed to name a few The years seem to be moving by so quickly and yet also in slow motion. I want the years Continue Reading
The Hope for Hannah and Gaby Gala Auction Site
I’ve spent the last two months, more or less, full time working as the Auction chair for this event. It is the largest fundraiser in the world for Rett Syndrome research and we are very proud to be such a Continue Reading
#Team Magnolia
Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for 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
Allergies
Rett is an ever changing mystery – and it’s one we’re constantly trying to solve. Any little thing could be a clue to helping her with some of her symptoms. We obsess over it – just trying to do everything Continue Reading
