In today's podcast, we talk to Jeneva Stone, a writer, caregiver and "sub-amateur" photographer. Jeneva and her husband Roger live in Maryland and have two children, an eighteen year old daughter, Edith and a twenty-one year old son, Robert. Robert has the rarest of rare diseases, so rare that he was undiagnosed for 14 years. Robert's dystonia is globalized and progressive; he is, essentially "locked in."

Despite being non-verbal, Robert has much to say and uses sophisticated eye-gaze technology to communicate. He has a wicked sense of humor, and Jeneva and Roger agree that he is "the happiest kid in the world."

We had a wide ranging conversation about her family's 14 year odyssey to find a diagnosis for their son, learning the language of non-verbal communication and the tricky interplay between being a writer and a caregiver. We hope you enjoy the show ...