( Image: GoFundMe)
A Boston mom has shared her heartbreak after her two-month-old son, Felix Jean, died from a genetic condition that caused his skin to slide off his body. Little Felix passed away in March 2022 due to complications linked with epidermolysis bullosa (EB), a condition causing painful skin blisters and peeling. His devastated parents, Erin and Travis Jean, opted for palliative care shortly after his birth upon learning his condition would only worsen with age.
Erin expressed her sorrow: “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.'” She continued, “I was really concerned about his quality of life, and so we took him home to hospice. He was at home for another four weeks, and he passed in our home at two months old.”
EB is an umbrella term for a group of genetic disorders resulting in skin blistering and fragility. In the US, there are approximately 20 cases per million births. Sadly, there is no cure, and management typically involves caring for the wounds caused by the condition, reported the Mirror.
Erin recalled the moment she realized something was wrong with Felix almost immediately after his birth, as he had no skin on the back of his hand. “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 doctors diagnosed Felix with EB. Erin 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. Ultimately, they decided the best course of action was to bring Felix 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, blissfully unaware of the tragedy.
The couple credits the non-profit organization 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.”
