Charlie Part II

In my last blog post, I introduced you to the plight of a mom and her son with epidermolysis bullosa (EB), through her powerful testimony at the Minnesota Capitol while advocating for stem cell research. Here is another except about how this disorder held her family hostage, and her never-ceasing tenacity to break free and provide a better quality-of-life for Charlie and the rest of her family.

Testimony (continued)
By Trisha Knuth

“From the moment Charlie opened his eyes in the morning, he was afraid. Most mornings dressings had moved out of place and sheets and pajamas would stick to his wounds. Charlie’s anxiety caused behaviors that further injured his skin. He became his own worst enemy by picking and scratching his wound. His ears and forehead were so damaged that they had to be completely wrapped 24 hours a day with only his face peeking out. The rest of his body was entirely wrapped from head to toe.

Experiences that families are meant to enjoy together were almost impossible. There were simply not enough hours in a day to accomplish Charlie’s cares and make time for enjoyment. EB defined every aspect of Charlie’s life and the life of my family. When we did get chances to adventure out in to the community, the stress of the “unknowing” public sometimes was too much. “Was he burned?” “What happened?” “Look at that kid.” followed us where ever we went.

I could see the toll that this monster called EB was having on my family. Charlie’s life was consumed with anxiety. My life was consumed with caring for Charlie. My other three children barely had a mother. Not by choice, but because I had no choice. My husband’s life consisted of working 12 hours swing shifts and then coming home to a house of never ending laundry and cleaning. In desperation, I spent countless hours researching this disease when I should have been sleeping. I think most nights I averaged a good four hours of sleep if I was lucky.

In search of relief, I sought out numerous specialty doctors from numerous states and facilities. When they refused Charlie’s Medicaid (Charlie’s adoption was considered a “special needs” so he was covered by Medicaid), I simply paid cash. After hours of travel, money, and hotel stays, we never ever were given any valuable information from these doctors. Most of the time, Charlie was a physical specimen for a disease that had only been read about. We became their teachers and source of information instead. Over and over we were told that all we can do is try to prevent infection by dressing changes, bleach baths, and vinegar soaks. Many times they prescribed antibiotics to offer a short-term relief for a couple weeks to get me off of their backs. One doctor told me that maybe in Charlie’s lifetime there would be a treatment or cure, but as for now, there is nothing.

Then I heard about the pioneering EB research at the University of Minnesota, and the work of Dr. John Wagner and Dr. Jakub Tolar. My life took on a new mission. I had hope.”

Here is a message from D r. Jakub Tolar, who is leading the efforts to change outcomes for children with this disorder.