August 10, 2021 - The KLS Project

Avner hooked with eeg contacts on his head

Camping in the Hospital Hoping for Answers

The hospital Avner moved from emergency to the pediatric floor on that Friday afternoon. Avner arrived at the hospital early in the morning after a difficult evening, still asleep and unable to cooperate, nonverbal and resisting attempts to examine him.

I undertook The KLS Project as a labor of love and a personal memoir of our family’s journey with Kleine Levin Syndrome. I have been writing about KLS for since 2017, recording my memories, posting questions where they might produce an answer and eventually answering many of those questions myself.

Our journey is unique. Yet, the National Organizations for Rare Diseases (NORD) estimates that about 20% of people have a rare condition. Even more have learning disabilities and struggle to access education and the goal of a Free Appropriate Public Education.

Ultimately, I write my 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.

You may want to read these posts in chronological order, but nothing says that you have to.

If you are wondering. The child in the header photo is not my child. It is a stock photo.

Day: August 10, 2021