The founder and director of the Cute Syndrome Foundation has published her first short book, titled Around And Into The Unknown. Around and Into the Unknown is available as an individual e-book as well as in six-story paperback anthology from Ponies + Horses Books. The story follows her family on their journey seeking answers for her daughter's disorder. If you want to know more about the status of what is currently known about Esmé's genes--this is the place the read all about it!
This journey begins, well before it I knew it, as my daughter’s cells began dividing inside me—her DNA reproducing itself over and over again, complete with a series of mysterious little errors. And now, while my beautiful four-year-old daughter struggles to move, to eat, to speak, to thrive, we must wait to understand why. We must wait while the frontier of what genetics "knows" expands into what it "suspects" and even further, into the places my daughter seems determined to illuminate. In other ways, however, this is precisely her story: the stillness of this long slow progress inward, around and around toward the truth of my daughter’s DNA.
Read a longer excerpt from the book here.