By Denise Ippolito Dandurand
As the mother of a child with EB, I can tell you first hand what this disease does to people.
My son, Hunter Dandurand, is 2 years old and has Recessive Dystrophic Epidermolysis Bullosa (RDEB). Being my first, and only child, I wasn’t sure how parenting was going to be, but I never imagined anything like this.
EB is a devastating medical disorder that affects everyone who comes in contact with it. Not because it is communicable, it’s not, because it is so graphic and painful most can’t bare to see it. If you can find a doctor that is familiar with EB, which I assure you is no easy task, they will explain to you what EB is. They will further tell you that there is nothing they can do. The medical community does not have the answers; all they can tell you is that they are working on it. Though there are many doctors researching this disease the cure is still years, maybe decades, away. At current they can’t even offer a treatment to lesson the symptoms.
Every morning my son wakes up in tears. The pain he feels everyday of his life is more than most people will feel in a lifetime. The blisters never stop coming, and the scars continue to thicken. Eventually the scar tissue will cause strictures and contractures, painfully immobilizing the victim until they are completely disabled. We battle infection and malnutrition everyday. There is a specific type of cancer that gets involved due to the continual breakdown of the skin that is very severe. If you successfully fight all the infections and malnutrition, somewhere around the age of thirty is the average life expectancy of a RDEB victim. In the long run, RDEB is a terminal disease. They say when one is faced with a tragic disease that there are phases you go through. The first being denial, where you can’t accept that this is happening to you. The second being bargaining, where you bargain with God or Satan, or whoever will listen. The last being acceptance. For some acceptance will mean sitting back and letting it happen, for others it will mean fighting to the very end. I belong to the second group. I have put my faith back in God. I now thank him for every day and every smile I get from my son. I have also put my faith back in me. The first 25 years of my life were just preparation for this. There is no blame to be placed, only answers to be found. The cure is within our reach if we believe it to be.
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