My son, Daxton, was born on November 9th, 2021 and that is a day I will always remember like it was yesterday. It started as a day of excitement, joy, and nervousness. In a blink of an eye, everything changed into a nightmare; the day I first heard of this monstrosity known as Epidermolysis Bullosa (EB). When they diagnosed my son with RDEB, I knew deep down it was something bad but I didn’t know the full extent of it. I did the worst thing anyone could do and googled what this disease was. As I was reading, I broke down crying and didn’t even know where to start with anything.
The EB community told us about the organization, debra of America, that helps EB fam
ilies in need. debra was a life changer for my family. Everyone we talked to was so friendly and had so much information for us about EB. They told us that they also help families with wound care supplies, which at the time I didn’t realize how expensive they are, and that most insurance companies won’t cover any of the bandage costs. It’s a great feeling to know that such a wonderful organization is out there to help us. We have had to ask debra for help a couple of times when I was switching jobs, and without hesitation, debra had us covered and supplies were immediately shipped to our house within days.
As a parent of an EB child, you never expect your child to be born with a disease or disability, and with EB, it was something I would have never in a million years guessed I would have to deal with. There is no family history so there were no warning signs. It’s been a roller coaster of a journey and some of the most challenging times of my life. As a father, it’s been a challenge for me to think that my son won’t be able to have a childhood like I had with riding and racing dirt bikes, hunting, camping or even going swimming at the lakes. It is extremely easy to fall into a deep dark place in your mind dealing with EB and thinking of everything your child may not be able to do. I’ve had to completely change my way of thinking. Instead of thinking my son can’t do something, I’ve told myself we will figure out a way so that he can do the things he wants.
EB is an everyday struggle. Especially seeing other fathers and sons doing the things that I pray Daxton and I can someday do without worrying about him getting hurt. But at the same time, it has also been amazing to see just how strong my son is. In his mind, he is just another hardheaded boy and nothing is going to slow him down. It’s been a joy to see, that so far, he’s not letting EB slow him down. Being an EB father has so many challenges, but EB has taught me so much about life and just how fragile it really is, and that the most important thing in life is your family and the time you spend with them. And also to enjoy and really soak in every moment, even the little things like sitting in the shade enjoying a popsicle.
- Dylan Volz, dad to Daxton
debra of America is the leading nonprofit helping families like Dylan’s by integrating direct-to-patient programs and services, education, advocacy, close partnership with treatment developers, and research funding to foster meaningful change for those living with EB.
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