Eli, a beautiful baby, was born on August 8, 2015, with a rare disease called Recessive Dystrophic Epidermolysis Bullosa (EB). People call it the Butterfly Disease because his skin is as delicate as a butterfly’s wings. Even small touches can cause blisters, wounds, and pain. The disease affects more than just his outer skin; it also affects the inside of his body, including his mouth and stomach.
Eli’s birth was complicated. His parents had experienced a stillborn baby, three miscarriages, and a failed IVF treatment. Finally, Eli was born using his mother’s sister’s donated eggs. His pregnancy was risky, and he had a condition called velamentous cord insertion, which can cause stillbirth. His mother also had to take many blood-thinning shots because of her own medical condition. When Eli was born, the doctors immediately noticed something was wrong. He had no skin on his feet, and the skin on his hands came off easily. He spent three weeks in the NICU. After going home, he needed constant wound care and exceptional nursing help to keep infections away.
Eli has this condition because both his father and aunt carry the EB gene, and his mother turned out to be a carrier too, which they learned after his birth. Right now, Eli and his family are in Minnesota. He is getting a bone marrow transplant, which is the only treatment that might help his skin get stronger. It is not a cure, but it may slow down the disease and help him live with less pain. His mother had to quit her job to stay with him for the next four months during treatment. His father is the bone marrow donor and travels back and forth between their home in Ohio and Minnesota.
Eli and his family are hoping for a cure someday. Until then, they are doing everything they can to protect his fragile skin and give him the best life possible. She had never seen her child in so much pain. His skin had never looked this bad, and she had never seen a day when he didn’t smile. Her heart was breaking, and she felt helpless. She knew she had to stay strong because she is his advocate and his voice, but on this day, she had some meltdowns. She was an exhausted mom.
Doctors told them that his immune system was now gone, making him very vulnerable. His hemoglobin was so low that he was close to needing a blood transfusion. His white blood cell count was slightly above 2, but they warned me that the worst was still to come. His white cell count would likely drop to zero. His energy would get lower each day. Over the next few weeks, chemo side effects would include hair loss, nausea, mouth sores, and pain. They want to do everything they can to protect his body from more damage while we wait for a cure for EB.
She had to quit her job so she could stay in Minnesota with him for at least four months. Her husband is his bone marrow donor and will be flying back and forth between Ohio and Minnesota so he can keep working and still visit them. Even with all of this, every day when she asks him how he feels, he answers, “Happy!” Even though he has painful wounds and has to stay in a hospital room for reasons he doesn’t understand, he remains positive. His strength inspires us. Eli shows us what a real superhero looks like: kind, brave, and full of hope. He gives them a reason to keep believing. “SMALL BODY, BIG FIGHTER”.
