A Boston mother has shared her grief after losing her two-month-old son to a rare genetic condition that caused his skin to peel off his body.
Felix Jean died in March 2022 from complications associated with epidermolysis bullosa (EB), a condition that causes painful blistering and peeling skin.
His devastated parents, Erin and Travis Jean, made the heartbreaking decision to place him in hospice care shortly after his birth, after discovering his agonizing condition would likely worsen with age.
“His whole life was a morphine drip and wound care,” Erin told the Boston Globe.
‘We talked about palliative care because I thought, “This is not the kind of life I think anyone should live, let alone my flesh and blood.”
A Boston mother has shared her grief after losing her two-month-old son to a rare genetic condition that caused his skin to slide off his body.
“I was very concerned about his quality of life, so we brought him home for palliative care. He was home for another four weeks and passed away at our home at two months old.”
EB is an umbrella term for a group of genetic disorders that cause blistering and fragility of the skin. There are about 20 cases per million births in the U.S.
There is currently no cure and treatment generally consists of caring for the wounds caused.
Erin recalled how she realized something was wrong with Felix almost immediately after he was born without skin on the back of his hand.
“There were also pieces of skin hanging from his mouth. I didn’t feel well,” he explained.
‘All the alarm bells inside me were ringing. As the minutes and hours passed, more and more skin was peeling off her body.
“His heels and feet were practically torn off. I tried to breastfeed him, but even that tore the skin on his lip.”
Within hours they were transferred to Mass General, where doctors diagnosed them with EB.
Felix Jean died in March 2022 from complications associated with epidermolysis bullosa (EB), a condition that causes painful blistering and peeling skin.
His parents made the heartbreaking decision to put him under hospice care after being told his condition would only worsen with age.
“This was the moment where I think the ground fell out from under me, because I was hoping that something would go in her favor,” Erin said.
She explained that children with the condition often end up with fused fingers and toes due to the injuries, as well as constrictions in their throats and abrasions on their eyes.
Erin and Travis later discovered that they both carried the EB gene.
Eventually, the Jeans realized that the best course of action would be for Felix to return home.
He received the best care and eventually died on the family couch, accompanied by his sister, who was two years old at the time and who was unaware of the tragedy.
The couple thanks the nonprofit Debra and the doctors at Mass General for helping them through the devastating situation.
Although they admit that they are not completely healed and have had problems with some friends and family who do not know 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 two other children, Isla, four, and Arlo, nine months, telling them their brother can be found in “pink skies and rainbows.”
“I want you to know who Felix is. We talked about him,” Erin added.
“It’s everywhere, it will always live in your heart and it will always be a part of your family. My four-year-old son seeks solace in nature, which I think is all he could ever really want.”
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