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 weeks we spent in the ICU with her were filled with tiny miracles, tiny triumphs of her will, our love, and modern medicine: Two years ago yesterday she was still on a ventilator but she showed us that she was still there, still fighting, by mustering a beautiful smile…and two years ago today, as if by complete magic, she was ready to come off the ventilator, faster than everyone anticipated–and we were allowed to hold her for the first time since almost losing her.
I watched her smile all day yesterday with extra attention. There is something about watching joy spread across her face that, despite the frequency with which we see it, it still resonates in me like that time in the ICU–it is still a sign of her strength and courage. I held her a little tighter yesterday thinking about how hard it is to not be able to hold your child after coming so close to losing them…I thought about how I used my voice to hold her then reading through the Pooh books, a Wrinkle in Time, and I can’t remember what else.
This anniversary has made me think a lot about fighting for Esmé and all the various forms that fight has taken. Sometimes it is so direct, like, helping her breathe. Sometimes it means searching for the right doctors, exploring the right balance of pushing her and accepting her, or raging against the insurance machine.
But over the last weeks I have found another path…a path that has the potential to combine both the abstract and the very real in helping Esmé. I have been quiet here for a few days, just waiting to be able to make this announcement.
As of yesterday The Cute Syndrome has become a foundation: The Cute Syndrome Foundation, to help support research into the disorder with which Esmé has recently been diagnosed, PCDH19 Female Limited Epilepsy. We are partnering with a wonderful organization: The Italian foundation Insieme per la Ricerca PCDH19. Insieme per la Ricerca PCDH19 has been funding research into PCDH19 for two years now. I hope to be able to join them this fall in funding a number of research grants. I have real hope that some of this research will be able to treat Esmé, and the girls like her. We are hopeful that we will see new anti-convulsant therapy with much lower side effects and therapies to address some of the behavioral and cognitive symptoms of this disorder.
Here, dear readers, is where you all come in. I know so many of you have loyally followed Esmé’s story. I know that she has touched your lives…I know this because I saw my readership skyrocket while you all held your breath alongside us through her last surgery and recovery. I know this because I see more clusters of readers popping up all around the world. Please visit our new website: thecutesyndrome.com. We have several ways that you can show your support for Esmé. You can donate money through a secure PayPal transaction. You can host a fundraiser in your community to benefit TCS. You can purchase merchandise on our CafePress shop, 25% of the cost goes directly to The Cute Syndrome Foundation. And please tell your friends and family about us.
Thank you with love,
The Cute Syndrome Foundation