Lindsay Monnier was overjoyed on Aug. 8, 2015, when she welcomed her baby boy, Eli, after suffering three miscarriages and giving birth to a stillborn baby girl. But she knew from the moment she saw the little boy that she’d be embarking on another painful journey.
“We found out he had recessive dystrophic epidermolysis bullosa right after he was born because he didn’t have skin on his feet,” Monnier, 31, tells PEOPLE of her son. “I was just happy that he was alive. We had tried so hard to conceive and carry a child to term. I didn’t really understand what the condition was until a few days after he was born.”
Recessive dystrophic epidermolysis bullosa or EB is a rare, genetic connective tissue disorder that leads to very fragile skin prone to tears and blisters from even the most minor friction, according to EB charity DEBRA Canada. The disease can even impact internal organs, according to the site. Children with the disorder are often referred to as “Butterfly Children,” as the condition leaves the skin as fragile as a butterfly’s wings.
“When I found out what the condition was and how severe it could be, it definitely felt very gloomy. I was angry at God for giving us a child that I thought would be in chronic pain his entire life,” she says. “The three weeks that he spent in the NICU were some of the darkest days of my life.”
Each day, Eli is bandaged from his neck to his toes to protect his delicate skin with only his head exposed — though Monnier says she sometimes has to wrap his forehead in a thick, white bandage as well. He has internal sores as well.
He has undergone four surgeries, including a recent bone marrow transplant in hopes of repairing …read more