Steady As You Go ~ By Roger Cornwall Feat. Carson Kissel
Sometimes I Complain About Life
Once in a while I think that I have it bad. Sometimes I think I was dealt a bad hand. Then I met Carson Kissel and all of that went away. When Carson was born, he was missing skin on his hands and feet. This, of course, was the reason for alarm. Shortly after, he was diagnosed with Epidermolysis Bullosa aka EB.
Epidermolysis Bullosa aka EB
Medically, EB is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States. There is no treatment or cure. The most prominent symptom of EB is extremely fragile skin that blisters and tears from minor friction or trauma.
Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
The Struggle Never Goes Away
Okay, now you know what this young man faces every day of his life. According to his mother Kristy, he gets bathed every two days and then has to be wrapped in bandages from head to toe. This is a three hour process, and it is very painful.
Carson is a miracle
With this debilitating condition and without fingers freely moving he has learned to play the piano and plays on the Miracle Baseball Team. Somehow he has taught himself how to maneuver the video game controller to become a masterful gamer and he is highly skilled at computer technology. WOW!
The Dynamic Duo
This song features Carson on the piano playing with the surgeon that freed his thumbs to increase his dexterity, Dr. Roger Cornwall.