Zachary was born with a genetic skin disorder. It is called Recessive Dystrophic Epidermolysis Bullosa. This is the worst disease you’ve never heard of. Zach is missing a protein in his skin. The protein that he is missing is Collagen VII. This protein is responsible for acting as the “Velcro” that holds your two skin layers together. Because Zach doesn’t produce this protein, any trauma and/or friction applied to his skin causes it to blister or shear off. The kids with RDEB are often referred to “Butterfly Children”. Their skin is as fragile as a butterfly’s wing. RDEB not only affects Zach’s skin, but it also affects the eyes, Zach often gets corneal abrasions and the GI tract. The simple act of swallowing saliva causes friction in his esophagus, making eating and drinking very difficult. Zach has had a gastrostomy tube since he was 3 years old. It is his primary way to get the nutrition that is extremely important to support wound healing and growth. He also has throat dilatations every three months to keep his esophagus open so he can drink.
When Zach was born, he was missing skin from his left foot, left shin and left knee. The doctors had no idea why Zach was missing skin at birth. We learned how to feed a baby that would get oral blistering. Diaper a baby whose skin could not handle any friction or elastic from diapers/wiping, do bandage changes on a squirming infant that you would cause more damage to by trying to help. And knowing there was nothing you could do for your baby and watching him be in incredible pain from open wounds on his little body, and every day there were new blisters to pop, and new areas to bandage. Administering medicines and making sure you could stay awake long enough to dose the baby correctly because there was absolutely no room for error. On top of all this, we had no idea how to be parents. Zach could not wear clothes until he was 2 months old. We had to hold him on silk pillows to avoid friction on his skin. A simple gentle hug or kiss would cause his skin to blister or shear off. It was horrific.
As the time went on, Zach has thrived. He still endures 3 hours per day wound care. It hasn’t gotten easier, but he knows that he must do them to stay healthy and infection free. The scar tissue thru the years has caused Zach to lose his ability to walk, and he also has “mitten” like hands. Scar tissue and contractures have been hard on him. He inspires us every single day. His strength and perseverance, and bravery are unmatched. We are so incredibly proud of him. He is a freshman in high school. He is on his school Special Olympics team. He is very proud to show everyone the medals he has earned. Zach enjoys camping with his family, playing video games and going to Camp Wonder, a camp that specializes in kids with skin disorders every summer. Zach has also reached out to other people his age with the same skin disorder that he has. This has been so good for him, and as he grows older, his support system also grows. Zach has adopted younger brothers that think the world of him. Amazing family, and a community that just embraces him. We enjoy the good times together, and we make it thru all the harder times.
Thank you for considering our application for vehicle modification.
:- Zachs Mom