A DISTRAUGHT mum watched her two-month-old baby die of a rare genetic condition which caused his skin to slide off his body.
Felix Jean passed away in March 2022 from complications associated with epidermolysis bullosa (EB).
The condition, which causes agonising skin blisters and peeling, led to Felix’s untimely death after a short battle.
At the time, his parents Erin and Travis Jean were forced to make the heartbreaking decision to switch him to end-of-life care after they discovered the cruel illness would only get worse as he grew up.
“His entire life was a morphine drip and wound care,” Erin told the Boston Globe.
“We spoke to palliative care because I was just like: ‘This is not the type of life that I think anyone should be living, let alone my flesh and blood’.”
EB is a general term used to describe a group of rare, inherited skin disorders that cause the skin to become very fragile – any trauma or friction can cause painful blisters.
There is currently no cure.
Treatment for the condition aims to alleviate the painful symptoms and prevent infection.
There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.
People with severe forms, like Felix, tend to have a life expectancy of just 30.
From the moment Felix was born, Erin knew something was wrong.
“There were pieces of skin hanging out of his mouth as well. It didn’t feel right,” she explained.
Over the next few hours, more and more skin began to peel off his little body.
“His heels and feet were pretty much completely de-gloved,” the mum said.
“I attempted to nurse, and even that shredded the skin off of his lip,” she added.
Within hours the baby had been transferred to Mass General Hospital, in Boston, US where medics diagnosed him with EB.
The mum was told that children with the condition often end up with fused fingers and toes, as well as scarring in the throat and cuts in their eyes.
Erin and Travis later discovered they were both carriers of the faulty EB gene.
The parents realised the best course of action would be to take their little one home.
He was cared for until he died on the family sofa just four weeks later while next to his sister, who was unaware of the tragic situation.
Today the parents are putting their efforts into keeping Felix’s memory alive for their two other children Isla, four, and Arlo, nine months.
She tells them that Felix is “everywhere” and will “always live in [their] hearts”.
Epidermolysis bullosa (EB) is an inherited skin disorder.
People who suffer from EB have very fragile skin, and any trauma or friction can cause painful blisters.
There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.
In the majority of cases, it becomes obvious that a person has EB soon after birth.
At the moment there is no cure for EB.
Treatment for the condition aims to alleviate the the painful symptoms and prevent infection.
Medical professionals work with families to decide what treatment is best for their child, which could include popping blisters with a sterilised needle and applying protective dressing to affected areas.
