Long word for a rare disease, isn’t it?
You may be thinking you have never heard of Epidermolysis Bullosa, also referred as E.B. You are in the majority as it is so rare many hospitals and physicians will never come across E.B. in their entire career. Yet, it does exist and there is presently no known cure or even effective treatment for E.B.
I went along for years, happy as a lark, donating to several different charitable organizations when able. Then I moved to Missouri and met the most beautiful, loving, pure-hearted little girl, my great-niece who was born with E.B. At first, I thought she was a burn victim as I viewed her tiny thin arms, hands and legs wrapped in white gauze bandages. It was not until later when I was able to speak with her mother that I grew aware of E.B. and I was in complete shock!
My body shook with great sadness, my eyes filled with tears as I heard the quality of life my sweet little angel experienced every single day of her life. It was not so much that she didn’t play or romp about as most children, but the ever-present fear that she would produce yet another blister in doing so. To be touched a bit too rough, to be lifted in the wrong way, to swallow food that would rub against the inside of her throat...all standard threats for a child with E.B. All actions I had taken for granted my entire life.
I was to learn, later, of the need to tear these blisters, a ritual that took hours and caused physical pain to the child and emotional pain to the caregiver who was usually a parent. You cannot just pop them. Ah, that of course would be too easy. No, you had to take a sterilized needle and actually tear each and every blister apart. Call me a coward if you must but I am not strong enough to watch the ritual of pain and I marvel at the courage, strength, and pure act of love any parent who performs this daily ‘bathe’ possesses.
Guess I fell in love with my nieces at this exact moment, mother and daughter bound by a devotion greater than you or I could ever imagine. How proud I was, and still am, of these two females, one a child growing into a teen, the other an intelligent, beautiful young mother. I wanted to wrap my arms around them, protect them from harm, yet I sat still unable to control the hard, cold facts of this disease, nor speak of hope when I found none. I hit me hard, as if a jackhammer had struck me across the face...no cure...little research...a death sentence.
You see, as E.B. is rare and quite unknown, large corporations and pharmaceutical companies are unwilling to fund research. Does it make sense to put money above human lives or profit before care and love? These are children. What is wrong with our world?
I cried to myself, “Dear God why...why...why?” Then it struck me. Perhaps God, the universe or whatever force creates life, held a plan. Maybe these were very special children who would teach us courage and strength, would illustrate by their pain and existence what really matters in life.
Most of all, they would show us how to grasp each precious moment and live life to the fullest, not looking back, nor forward but living each second of life, not just existing.
Ending, I can say that I view my great-niece as perfection. No longer do I see the bandages, the blisters or feel pity. She has such wise eyes and a remarkable spirit and zest within her which emits a light so bright it overpowers any other emotion except pure love.
Authors note: I will not be silent as long as a disease such as EB exists in the world, nor will I stand by taking no action. Each book I write is penned with broader intent as I am committed to donating a portion of each sale of my book(s) to the EBMRF Foundation who use 98% of funding on actual research. There are videos and information on E.B. on my web-site Meaningful Writings.