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 his immune system.
“It was hard adjusting to being at home with a child who I couldn’t even put clothes on without hurting him, without them tearing his skin. That was a really difficult period. It wasn’t until [he was 8 weeks old that] Eli gave me a smile for the first time,” she tells PEOPLE.
“In that moment, a lot of my fears and anxieties kind of disappeared because it made me realize that he can be happy and he’s not going to live in pain every moment of his life. Up until that point, he hadn’t smiled at me or showed me any happy emotions.”
These days, photos of now-2-year-old Eli show a happy, bubbly boy who sports a wide grin despite his bandages and bruised face. Still, Monnier says although Eli puts on a brave face and “copes with his pain very well,” life is still difficult.
“If he rubs his forehead he’ll rub the skin off of his forehead. He’s bandaged from his neck down to his fingertips and toes. The bandages help to an extent but they don’t protect everything,” the mom says. “His skin is super thin, and fragile and tearing. It’s just splitting apart because there’s nothing holding it together.”
From left: Lindsay, Eli and Alex Monnier
She adds: “He just had an accident the other day where he fell off of a chair. He tried to get off the chair himself and he doesn’t have the strength that he did even two weeks ago. The bandage, it actually pulled and his skin completely tore off of his chest. So he has this huge wound that takes up half his chest.”
Although there is no treatment or cure for the illness, Eli is involved in a clinical trial to treat the EB. Doctors are working to restore his immune system, Monnier says.
Although the boy’s future is uncertain — some EB cases can end in death —Monnier says she has hope that her little boy will lead a full life.
“He’s a very friendly, happy child. We always say he’s very forgiving. He says ‘hi’ to anyone that walks by him. He just wants attention, he wants someone to look at him and say, ‘Hi, how are you?’ and smile back at him,” she tells PEOPLE.
“He’s very musically-inclined. He is extremely intelligent and very well-spoken. He’s very strong-willed, which sometimes tests my patience. But he’s an amazing kid.”