Although there are many versions of the fairytale, “The Little Mermaid,” the one I grew up with claimed that after Ursula turned Ariel into a human, every step that Ariel took on dry land was one filled with pain.
What if such a concept didn’t only exist in the fairytales, but was actually true?
Jonathan Pitre was born with the disease known as Epidermolysis Bullosa (EB). It is one of the most rare and painful genetic conditions, whereby as a result of skin protein defects, the skin is extremely fragile to any touch. Any friction on the skin causes breakage and blisters, while eating causes painful blisters in the throat.
The human skin is composed of two layers; the outer layer, the epidermis, and the layer underneath, the dermis. Healthy skin contains different proteins that exist between these two layers of skin. These anchoring proteins prevent the layers from moving separately from each other, which is called ‘shearing’.
In individuals suffering from EB, the two skin layers do not possess these protein anchors. As a result, there is nothing to prevent them from moving independently from each other. Subsequently, the skin is extremely fragile, as even the minutest amount of friction can cause the separation of these two layers, causing blisters and sores. Those with EB have been said to compare these sores with the pain felt from a third degree burn. The excruciating pain these individuals suffer through every single day of their lives is unfathomable.
Even the smallest amount of pressure or rubbing from even the subtlest movements can cause these blisters, including standing, walking, and even lying down on a bed. In addition to this constant pain, those afflicted with EB are also at an increased risk for skin cancer, due to the chronic skin damage they suffer from.
These individuals are known as “Butterfly Children” because their skin is as fragile as the wings of a butterfly. However, as Jonathan states, “as much as a butterfly is pretty yet gentle, we have the heart of warriors. We are very much stronger than we appear.”
Despite his pain, Jonathan has always loved sports specifically hockey. When he was younger he tried ball hockey and eventually also tried sledge hockey. However, the recovery became too much to handle, and he now can no longer play sports. He explains how he would dream of being able to play and score that winning goal.
The most painful part of Jonathan’s day is his bath. After carefully soaking, he must remove the bandages that are wrapped around him. Then he has to place new dressings on his body. In total it can take over 3 hours, and this must be done every other day. The pain is agonizing.
No cure has been found for EB, although those suffering from a more mild form of the disease may experience some improvement as they age. Although most Butterfly Children do not make it to the age of 30, Jonathan has a will and outlook that drives him to continue his painful routine and life—a message that we can take to heart as well. “I’m here and I’m going to go step by step, day by day. I may live till 100, you never know. I’m going to keep going.”