‘His skin is as fragile as the wings of a butterfly’: Mom’s heartbreaking account of son’s rare skin condition
“This is our son, Eli, who was born August 8th, 2015, with Recessive Dystrophic Epidermolysis Bullosa, also called the Butterfly Disease because his skin is as fragile as the wings of a butterfly. But it’s more than just external skin… his external connective tissues, especially throughout the Gastrointestinal tract, also blisters and shears.
Eli was born following a stillborn daughter, 3 miscarriages, a failed IVF with PGS cycle, and finally a donor egg cycle using my sister’s eggs. He was born despite a velamentous cord insertion which occurs in 1% of pregnancies and can lead to stillbirth. He was born after countless injections of blood thinners due to my own clotting disorder.
When he was born, we found out immediately he likely had a form of Epidermolysis Bullosa because he had no skin on his feet and his skin sheared off his hand and was suctioned out of his mouth when nurses cleaned him from delivery via C-section. He spent three weeks in the NICU and has spent the remainder of his life at home with in-home nursing care due to the extent of wound care that is required, and the risk of infection from larger daycare centers.
Eli was born with his form of Epidermolysis Bullosa (EB) because my husband and sister are both carriers. But I am also, which we learned after he was born.
We are currently in Minnesota for a bone marrow transplant which is a risky, and only systemic treatment for EB. It’s not a cure, but if it works it can slow down the progression of his condition and give him stronger skin. We are hopeful for a cure. We want to minimize any further damage EB can do to Eli’s body until we wait for that cure.
I had to quit my jobs to be in Minnesota with our son over the next 4 months, which is just a minimum amount of time we will be here. My husband is Eli’s bone marrow donor and will be flying between Ohio where we are from and Minnesota to maintain his job and visit with us.
Lab wise… they say he has no immune system anymore and is very susceptible. His hemoglobin is close to needing to be replaced with a blood transfusion. His white blood cell count is still above 2. I have been warned the worst is yet to come. His white count should continue to go down until it is at or almost at 0. His energy should lessen as the days go on. And over the next few weeks, side effects from chemo should set in like hair loss, nausea, mucositis, and pain.
This picture below marked the hardest day of our lives thus far. I have never seen my child in as much pain as he is in here. I have never seen his skin this bad. I have never seen a day without a smile. My momma heart is breaking and feeling helpless, though I know I am his only advocate and his voice right now. I am trying to stay strong for him but on this day I had some meltdowns. I am an exhausted momma.
The fact that every day when I ask how he feels, he responds, ‘happy!,’ despite painful wounds and being confined in a hospital room for reasons he can’t understand, is truly inspiring. We could all take lessons on life from this child! Eli is the true definition of a superhero. He is incredibly friendly and polite. It’s unbelievable. He gives us a reason to love and believe in hope.
Lindsay Monnieria Lindsay Monnier. Eli is being treated at the Masonic Children’s Hospital at the University of Minnesota in Minneapolis.
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