Mother's heartbreak after baby son died of genetic condition that caused his skin to slide off body

A Boston mom has shared her heartbreak after her two-month-old son died from a genetic condition that caused his skin to slide off his body.

Little Felix Jean died in March 2022 due to complications linked with epidermolysis bullosa (EB), a condition which causes painful skin blisters and peeling. His devastated parents, Erin and Travis Jean, decided to put him on palliative care shortly after he was born - after finding out his condition will only worsen with age.

Erin said: "His entire life was a morphine drip and wound care. 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.

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"I was really concerned about his quality of life, and so we took him home on hospice. He was at home for another four weeks, and he passed in our home at two months old."

EB is an umbrella term given to a group of genetic disorders that result in skin blistering and fragility. There are roughly 20 cases per every million births in the US. Sadly, there is no cure and management normally takes the form of caring the wounds caused due to the condition.

Erin recalled how she realized something was wrong with Felix almost immediately, after he was born with no skin on the back of his hand. She said: "There were pieces of skin hanging out of his mouth as well. It didn’t feel right.

"Every alarm bell inside of me was going off. As the minutes and hours progressed, more and more skin was starting to tread off of his body. His heels and feet were pretty much completely de-gloved. I attempted to nurse, and even that shredded the skin off of his lip."

Within hours they had been transferred to Mass General, where medics diagnosed EB. She said: "This was the moment that I think the floor completely ripped out from underneath me, because I was just so hopeful that something would be in his favor."

Erin and Travis later discovered they were both carriers of the EB gene. In the end, the two realised the best course of action would be for Felix to come home. He was under the best of care, and eventually passed away on the family's couch with his then two-year-old sister by his side, who was blissfully unaware of the tragedy.

The couple credit non-profit Debra and the medics at Mass General for helping them through the devastating situation. Today they remain focused on keeping Felix's memory alive for their other two children Isla, four, and Arlo, nine months - telling them their brother can be found in 'pink skies and rainbows'.

Erin added: "I want them to know who Felix is. We talk about him. He’s everywhere, and he’ll always live in your heart, and he’s always a part of your family. My four-year-old looks to nature to be comforting, which I think is all I could ever really hope for."