I created The KLS Project as a labor of love and a personal memoir of our family’s journey with this rare illness. Every aspect of our lives have been changed by Kleine Levin Syndrome. I have been writing about KLS for the past few years, recording memories in my memoir, posting questions anywhere I thought might produce an answer and eventually answering many of those questions myself.

In some ways our journey is unique. Yet, the National Organizations for Rare Diseases (NORD) estimates that roughly 20% of the population has a rare condition. Even more have learning disabilities and struggle with access to education and the goal of receiving a Free Appropriate Public Education.

Ultimately, I am writing a story about the challenges of parenting. Some aspects of the story contain exceptional circumstances but most of the solutions come from love, honesty and constantly assessing expectations.