Parents Share Heartbreak After Baby Dies from Rare Skin Disorder
TL;DR Summary
A Boston mother, Erin Jean, shares her heartbreak after losing her two-month-old son, Felix, to epidermolysis bullosa (EB), a rare genetic condition causing painful skin blisters and peeling. Despite efforts to manage his condition, Felix's parents decided on palliative care due to his deteriorating quality of life. Felix passed away at home, surrounded by family. Erin and her husband, Travis, are now focused on keeping Felix's memory alive for their other children and credit non-profit Debra and Mass General medics for their support.
Topics:health#epidermolysis-bullosa#family-grief#health-and-family#infant-loss#palliative-care#rare-genetic-condition
- Mother tells of heartbreak after adorable baby son died at two months of rare genetic condition that caused hi Daily Mail
- Erin and Travis Jean’s son, Felix, died in infancy from a rare skin disorder. Here’s what they’d like other families to know about losing a child. The Boston Globe
- Baby dies of rare genetic condition that caused his skin to slide off MSN
- Mother's heartbreak after baby son died of genetic condition that caused his skin to slide off body The Mirror US
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