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Mother tells of heartbreak after adorable baby son died at two months of rare genetic condition that caused his skin to slide off his tiny body
A Boston mom has shared her heartbreak after losing her two-month-old son to a rare genetic condition which caused his skin to slide off his body.
Felix Jean died in March 2022 from complications associated with epidermolysis bullosa (EB), a condition which causes painful skin blisters and peeling.
His devastated parents Erin and Travis Jean made the heart wrenching decision to put him on palliative care shortly after he was born, after finding out his agonizing condition was only likely to worsen with age.
'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.”
A Boston mom has shared her heartbreak after losing her two-month-old son to a rare genetic condition which caused his skin to slide off his body
'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.
There is currently no cure and management usually takes the form of caring for the wounds caused as a result.
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.
'There were pieces of skin hanging out of his mouth as well. It didn’t feel right,' she explained.
'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.
Felix Jean died in March 2022 from complications associated with epidermolysis bullosa (EB), a condition which causes painful skin blisters and peeling
His parents made the heart wrenching decision to put him under palliative care after being told his condition would only worsen with age
'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 said.
She explained that children with the condition often end up with fused fingers and toes from the wounds, as well as strictures in the throat and abrasions in their eyes.
Erin and Travis later discovered they were both carriers of the EB gene.
Eventually, the Jeans realized that the best course of action would be for Felix to come home.
He was given the best 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.
Although they admit they are not quite healed and have struggled with some friends and family not knowing how to handle the tragedy.
Mom Erin Jean (pictured with Felix's sister Isla) hopes to keep his memory alive and spoke out about her loss
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'.
'I want them to know who Felix is. We talk about him,' Erin added.
'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.'