Death of infant due to rare genetic disease affecting skin

A Boston mother has opened up about the devastating loss of her two-month-old son, Felix Jean, who succumbed to a rare genetic condition called ‘Epidermolysis bullosa’ (EB) in March 2022. This condition, which causes painful skin blisters and peeling, led to Felix’s untimely death after a short and agonizing battle.

Felix was born with no skin on the back of his hand. As hours passed, more of the babys’ skin began to peel off, leaving his heels and feet almost entirely de-gloved. Even nursing caused his skin to shred off his lip.