Butterfly Baby Carter

This is baby Carter Gamez. He is a 1 month old from Hillsboro OR. He was born February 28th at tuality Hospital. The day he was born baby carters mom and dad (Martha and Victor) noticed his skin was peeling on his hands and feet. They asked the nurse and they said sometimes that happens to infants. Leaving it at that since they said it was okay and will go away on it’s own. Couple hours later blisters started forming and then they knew it wasn’t normal. Unfortunately it wasn’t. They were transferred to OHSU where they were told the worst news. Carter was diagnosed with a very rare skin disease that goes by the name of Epidermolysis Bullosa. Also known as butterfly skin because it’s fragility. EB is genetic and affects only 1 in every 20,000 live births. Because of the fragile skin any friction trauma or heat causes painful blisters to form and his skin to fall off. Carters main affected areas are his hands, feet, arms, face, and mouth. Their main focus is managing his pain and getting him to eat properly as the blisters in his mouth make it impossible to take the bottle. Carter can’t wear normal clothes and wears gauze’s on his hands and feet 24hours a day every day. They have been taking this day by day as it never gets easier. This is something that’s around the clock with no breaks. Carter has 3 other siblings that mom and dad worry about as well. A 9 year old sister Ailani, 4 year old Levi, and 2 year old Ethan. As you can imagine how overwhelming it is worrying about medical expenses, rent, and everything else piling up during this difficult time. Prayers are needed as well as anything to help. God bless

Epidermolysis Bullosa or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the US are affected. There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is lengthy and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability, and in some cases early death.