March 2, 2016The Cute Syndrome Foundation No Comments

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

My brain on a ring

February 17, 2016The Cute Syndrome Foundation 1 Comment

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

January 12, 2015The Cute Syndrome Foundation No Comments

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

November 9, 2014Special Needs Child, The Cute Syndrome Foundation No Comments

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

May 15, 2013The Cute Syndrome Foundation No Comments

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

15,000 pageviews!

May 7, 2013The Cute Syndrome Foundation No Comments

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

An Announcement

May 4, 2013Advocacy, The Cute Syndrome Foundation No Comments

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