August 2020 - The KLS Project

Stepping Through the Crisis

His leg just hung from his body, showing no signs of life, except a pulse. We visited a spinal specialist for an expert opinion. He performed a physical exam and a basic pinprick assessment which also indicated a problem. An orthotic insert was ordered that fit in Avner’s shoe to manage the drop foot. The doctor also ordered an MRI.

Going Downhill

Rural Georgia is no place to have a medical emergency on a weekend. The only hospital is small. The emergency staff was sparse and equipment was minimal. The first task after providing insurance information and identification was getting someone to offload Avner from the bus onto a gurney.

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.

Month: August 2020