About the Newsletter Archive
Please enjoy learning about Sophie’s history through the newsletters that we began soon after she was born. Sophie’s rare disorder, Hereditary Sensory Autonomic Neuropathy, type 2, non Charcot-Marie-Tooth, is not only a mouthful, it is also extremely rare. This is the current name for the disorder. As you read the beginning newsletters you will see it referred to as HMSN type 2. The disorder didn’t change, just the moniker. Our journey is filled with mysteries, highs and lows, and most importantly with the touch of many angels on Earth.
I have added in photos that relate to the time the newsletters were written. We began writing them when we discovered that the “grapevine” was sending wrong messages, and we wanted to keep friends and family in touch with all of our adventures. When we began fund raising to help deter some of the most daunting expenses, this was a way to keep contributors in the loop too.
Rereading these letters has been bittersweet. It brings back some horrific memories, but also all of the wonderful things we have done to help Sophie. There is so much that is left out of the newsletters, mostly because we didn’t want others to see some of the dark sides of our journey. It does reflect the overall story of Sophie, and some day I hope to fill in those missing pieces, no matter how hard it will be to document some of them.
Sophia Rae Prunty was born on December 28, 1993 in Oak Park, Illinois.