As influencer Hannah Campbell mourns the death of her 10-month-old daughter, Elliana Rose, she is also doing her part to fight the disease that affected her baby girl.
Campbell announced on Monday, April 7, that her daughter had died after a battle with epidermolysis bullosa, sharing a heartfelt message via TikTok in which she said the disorder “stole” Elliana from her and her husband, Jacob. (The couple also shares toddler Ember.)
“Our sweet girl Elliana Rose lost her battle last night,” Campbell said in the video. “She passed peacefully last night, wrapped in love. I don’t know what to do with myself today. I’m heartbroken, and I’m angry. No child should have to endure what she did. EB stole her from us. Let’s fight for a cure so no other family has to feel this. Thank you for loving her with us.”
Doctors diagnosed Elliana with EB when she was just two weeks old, telling her family that it was unlikely she would live beyond a year. Campbell and her family soon moved from Virginia to Maine in order to be closer to family and Elliana’s medical treatment in Massachusetts.
TikTok Star Bella Brave, 10, Dead Nearly 1 Week After Being Placed in Coma
Keep scrolling to learn more about Elliana’s rare condition:
What Is Epidermolysis Bullosa?
Epidermolysis Bullosa is a rare genetic disorder that usually impacts infants or young children, causing fragile skin that blisters easily, according to the Mayo Clinic. Blisters can occur in response to even minor irritants like rubbing and scratching. They can also arise inside the body, particularly in the lining of the mouth and stomach.
In addition to blisters, EB symptoms also include thick or unformed nails, pimple-like bumps called milia, tooth decay, difficulty swallowing, and itchy and painful skin.
Siesta Key’s Madisson Hausburg Shares Baby’s Diagnosis After Hospital Stay
Is There a Cure For EB?
There is no known cure for EB. Treatment can consist of tending to the blisters, including bandaging of the skin and diet changes that promote skin healing. Surgery may also be necessary to treat the wounds. Doctors may place a feeding tube into the stomach to improve nutrition, dilate the esophagus to make swallowing easier and do simple procedures to improve function in the hands and feet, according to Cincinnati Children’s Hospital.
For Elliana, treatment included “constant wound care, special medical supplies and adaptive equipment to keep her comfortable and safe,” according to a video Campbell posted via TikTok in March.
Ryan Reynolds Says Late TikToker Bella Brave ‘Took Zero S—t’ From Him
Is EB Always Fatal?
Not always. Children with a more mild form of EB could eventually see their symptoms improve with age. Others can attend school with certain adaptations. More serious forms of EB, however, can shorten life spans significantly. Elliana had a severe case of Junctional Epidermolysis Bullosa, which is often fatal.
“Severe JEB often takes lives way too soon, and even the ‘milder’ form still causes daily pain, wounds and lifelong challenges,” Campbell said. “There is no cure, but there is hope. Every child with EB deserves a future without pain. Spreading awareness leads to research, treatments and, one day, a cure.”
