Year: 2020

Jonathan and his friend Leonard planking.

Seeing Some of the Worst Symptoms of KLS

Avner would become mute and disconnected from everything else around him. On one occasion, he left the Scout House to sit on a bench outside. When our Scoutmaster, Crill and I tried to speak to him, he refused to acknowledge us. I tried to get him into my car at the end of the meeting. Instead, he got up and started walking towards home, only a mile away. I called Barbara from the Scout House to let her know that Avner was walking home. He walked past her which worried us both, but eventually turned around and came inside.

running shoes with orthotic insert

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.

Avner on the makeshift stretcher

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.

Me dressed as a pirate

Blindsided

This night owl stuff had to stop. Not only wasn’t Avner waking in the morning. He was potentially violent when we tried to wake him. He would lash out with hands or if someone was at his feet, he would kick. At the same time, it was evident that Avner was waking at night to eat. Sometimes, he would deny it. We would find plates and bowls under his bed, along with sport drink bottles. On one occasion, he even drank most of a bottle of maple syrup.