3-Year-Old Eli Has A Rare Condition That Causes His Skin To Break With The Slightest Friction, But He Is Happy Despite His Struggles


3-Year-Old Eli Has A Rare Condition That Causes His Skin To Break With The Slightest Friction, But He Is Happy Despite His Struggles

Eli Monnier, the "Butterfly Boy"

After three miscarriages and one stillbirth, Lindsay Monnier and her husband Alex were overwhelmed with happiness when their son, Eli, was born on August 8, 2015. Before the delivery, the couple had idea they would have to face another uphill battle.

Eli was born with dystrophic epidermolysis bullosa (EB), a rare genetic disorder that causes a very fragile skin. In EB, the gene that codes for one of the proteins that help hold the skin together is faulty. The skin of those affected by EB is prone to tears and blistering from even the slightest friction. Children born with EB are often called “butterfly children”.

Eli spent the first three weeks of his life in the NICU. Lindsay was upset, thinking about the suffering her boy would have to endure every day of his life. But, eventually, she realized her son can enjoy life despite the limitations of his condition.

Eli’s brave fight

Eli is already three years old. Every day, his whole body (except his face and the tips of his fingers and toes) has to be bandaged to protect his skin. He has already had four surgeries, including a bone marrow transplant to aid his immune system.

Despite his condition, Eli is as happy as he can be. His mom told People about the sweet moment of him smiling at her for the first time when he was 8 weeks old:

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.

Unfortunately, there’s no treatment or cure for the rare disorder. Lindsay and other parents of “butterfly children” can’t do much except keep their kids bandaged to protect their skin and prevent infections. Lindsay told People her son is taking part in a clinical trial. That may lead to a better treatment of EB for Eli and other kids affected by it.

It’s not clear what the future holds for Eli, but his mom is hopeful. She told People:

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.

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.

God bless Eli and his amazing family!

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