I’m very excited to say that the post I wrote for Rare Disease Day on the Boston Children’s Hospital Pediatric Health Blog has been picked up by the Huffington Post Blog! I’ll share some of it here, but visit the links above to read the full piece. Every time I have a piece published in a … Read More
The Cute Syndrome Foundation
My brain on a ring
I imagine many of you can guess that I spend a lot of time dealing intensely with the limits of reality–medical realities, scientific realities, personal realities. And I do. But also? I also deal in magic. Every single day since Esmé was born I have lived in a world filled with all kinds of magic … Read More
Four Years of Ezzy: Year 3
Year three of Ezzy’s life was a lesson in making peace. All of her first year we thought “if only we could get her GI system working better.” And then during her second year we thought “if only these seizures would stop” …and “if only we had a diagnosis” and “if only her GI system … Read More
November 9th
The entire month of November is Epilepsy Awareness Month, but today is a special day. November 9th is the second annual PCDH19 Epilepsy Awareness Day. To celebrate we are asking supporters to share photos of themselves with purple balloons (purple outfits, purple hair, purple anything works too!). You can share them on instagram by tagging … Read More
The “Cute” Necklace
Our friends over at The Quiet Woods have designed ten limited edition “Cute” Necklace to benefit The Cute Syndrome Foundation (50% of proceeds go to TCS). This beautiful necklace is 17″ long with a 1″ bar stamped with the word “cute.” It is made entirely of sterling silver, adorned with a purple crystal for epilepsy awareness! … Read More
The Cute Syndrome Video
I am happy to provide you with The Cute Syndrome’s official video:
15,000 pageviews!
Some time in the middle of the night yesterday we reached 15,000 pageviews. I am still astounded by our readership…We are so pleased to have such a loyal group of folks who follow what is going on in Esmé’s life. Here we are now growing exponentially and getting to celebrate such a wonderful milestone during … Read More
A little Cute Syndrome Joy!
An Announcement
As most of you know this is a pretty big week in our family. It is the two-year anniversary of Esmé’s amazing recovery from severe aspiration pneumonia and cardiac and respiratory arrest. Two years ago we were still waiting around the Intensive Care Unit at our hospital waiting to see whether Esmé would recover. The … Read More