Imagine having to torture your child every day of their life just to keep them alive! For Reid Davis Underwood, this is the reality that he lives with and has to endure. Reid has Recessive Dystrophic Epidermolysis Bullosa (RDEB), which is a debilitating genetic skin disorder which affects absolutely every part of his life. Left untreated, RDEB can cripple children from the repeated damage to the skin, which leads to severe scarring and deformities. Chronic open wounds all over the body increase the opportunity for dangerous infections. Reid’s body has to be cleaned with a bleach or vinegar solution to kill bacteria. The simple act of eating something that is not soft can tear the lining of their mouth and esophagus. Doing normal things that a baby should be doing are much different for Reid.
RDEB is the worst type of EB and the damage that it inflicts is impossible to comprehend. Reid lacks the Collagen VII protein that holds the layers of skin together, so any friction on the skin can blister it or take it completely off. Playing with an ordinary toy or drinking from a bottle has the opportunity to damage Reid’s skin. Hugging Reid or bouncing him on your lap can rip his skin off.
Last summer, the family met an incredible doctor named Dr. Jakub Tolar. Reid underwent an experimental clinical trial at the University of Minnesota’s Children’s hospital where he received a bone marrow transplant (BMT) from his sister Avery (5). Avery and Reid are a perfect DNA match and have the same blood type, so it was the best case scenario. The stem cells in Avery’s marrow could produce the Collagen VII that Reid was missing. His body now has the ability to produce Collagen VII, but not at a normal level and it will take time to see benefits. The BMT is not a cure, but a step to improving the quality of his life and get him to the next treatment to help. Reid’s skin is stronger after the BMT, but that is such an understatement. While his skin is stronger, the simplest things can damage him and cause so much pain. There is no question that the kids with RDEB are the strongest individuals on the face of this planet! We will never comprehend what he goes through on a daily basis, but are overwhelmed that he still finds a way to smile and laugh.
Reid will need specialized care for the rest of his life and we are raising money in order to care for him now and in the future. Reid requires high tech bandages which do not stick to his skin and help protect against damage and keep his wounds as clean as possible. The family also hopes to be able to bring in a wound care nurse to help care for Reid. The emotional toll that it takes on Reid and Audra is extremely high. Reid looks to her for comfort and she has to inflict pain which is equivalent to torture multiple times a day. The process of lancing growing blisters and cleaning with a bleach or vinegar solution to keep infection away is more than any mother should have to do to keep their child alive. In their current situation, Audra can’t leave Reid at all due to the constant care that he requires. This leaves little, if any, time at all to spend with our two older children, Avery and Barrett. Since Reid is a Bone Marrow Transplant patient he has not be able to be in public for over a year after transplant while his immune system was becoming stronger. Being able to provide Reid with a nurse that specializes in wound care will be such a relief as Audra would not always have to be the person associated with causing him pain. Also, a nurse could help administer his medicines, help feed him through his feeding tube and also administer any IV medicines that he is on. The goal is enormous but the family would deeply appreciate any help in meeting this need.