After Sharmila gave birth to her beautiful baby daughter, she was overcome with joy. Baby Sohana, as far as the new mom was concerned, was born perfectly healthy and normal — apart from a small patch of peeling skin on her neck.
By the next morning, however, Sharmila noticed something strange about the tiny name tag placed around her baby’s ankle by the midwife. The skin around the name tag, and across her foot, had been completely rubbed off. The medical team was concerned and started running tests on the newborn.
Within weeks, a biopsy confirmed Sohana was born with a severe case of epidermolysis bullosa (EB), of which there is no treatment or cure. EB is a genetic condition that causes painful skin blistering and cracking, and its severity ranges from mild to fatal. It’s commonly referred to as “butterfly syndrome” because it can make one’s skin as delicate as butterfly wings.
For months after she was born, Sohana had to “live” on a special hospital-grade pillow. Her parents were terrified to pick her up or even touch her.
Sharmila has since dedicated her life to caring for her daughter on a 24/7 basis — and Sohana is now 16 years old. The teen currently lives in a state of constant soreness and itchiness. It’s not uncommon for her to wake up with blood on her pillow.
Every day, Sohana wakes up early enough so her mom can unwrap her arm bandages, then prick her blisters until they pop before cleansing and moisturizing her skin. This is all completed before Sohana goes to school for the day.
In the video below, meet this incredible mother-daughter duo.
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