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 this meaningful anniversary and the launch of The Cute Syndrome Foundation.

I know that my writing has been different these last few days as I am focusing so much on getting The Cute Syndrome Foundation off the ground. This project, both the blog and now the foundation, have been a huge part of my ability to feel as though I have some meaningful way to engage in the world outside our little bubble. I don’t see many people (who aren’t doctors or nurses or Ezzy’s therapists) on a daily basis… Especially recently as it seems Esmé catches things when people just look at her across a room. And this can feel so very isolating.

As I write here it has felt sometimes as though I am speaking into an abyss. But as I see our page views increase, my readership expand into new countries, I feel so supported by the idea that these things aren’t just happening to us in a black hole…but that they are happening within a community of people who are pulling for us…a community of people who I realize are seeing the world a little bit differently because they know about Esmé.

It is truly my hope that knowing about Esmé makes you all feel a little bit more fearless, a little bit more compassionate, a little bit more determined, a little bit happier.

But what I don’t know is clear is that knowing about each of you, dear readers, has given me that gift as well. Without the encouragement I have received from knowing you all are there, I never would have thought to make The Cute Syndrome more than what it was to start: a place for me to record my thoughts, to not forget about my love of words, a place to be myself.

The Cute Syndrome is still all of those things still–and will continue to be–but now it is also more. I feel TCS has the capacity–with the help of some other truly amazing foundations and people–to make real change in the world…for Esmé, for other girls affected by PCDH19 FLE, and for others.

I have never felt so hopeful about Ezzy’s future as I do now.

I anticipate being able to co-fund one or two grants with Insieme per la Ricerca PCDH19 this fall. We have a $10,000 matching donation available to us if we can reach the same amount by August. We have several fundraising activities in planning stages. And I am hopeful that we will start to see some corporate giving. I hope that all of you will help me to meet these goals. Visit our website: and like us on facebook:

And most importantly tell your friends and family about us. Encourage them to donate and to talk about Esmé, PCDH19, and The Cute Syndrome Foundation.

Thank you!

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