A Brewer family is mourning the death of their 10-month-old baby, Elliana, who died on Monday of a rare skin disease that causes painful wounds from the slightest touch.
Elliana Campbell was born on May 23, 2024, with a severe form of epidermolysis bullosa, a genetic skin disease in which even the gentlest touch can cause painful blisters and wounds. Children with the condition are often called “butterfly children” because their skin is as fragile as a butterfly’s wing.
There is no cure for the painful disease.
Elliana’s short life captured the attention of millions as her parents documented what it took to keep her as safe and comfortable as possible. These near daily videos, posted to social media app TikTok, spread awareness of Elliana’s rare disease, likely leading to lasting impact following her death.
Hannah and Jacob Campbell of Brewer lived in Virginia when Elliana, or Ellie, and her older sister, 2-year-old Ember, were born.
The Campbells noticed a few blisters appear on Ellie shortly after she was born and a neonatal pediatrician at the hospital said it could be epidermolysis bullosa, “this awful disease we had never heard of,” Jacob said.
After staying in the NICU for her first two weeks of life, a specialist diagnosed Ellie with generalized severe junctional epidermolysis bullosa. Babies born with this severe type of epidermolysis bullosa usually don’t live past their first birthday because the disease affects their internal organs.
By the time she was roughly 2 months old, the Campbells were told Ellie’s condition was fatal.
“It was absolutely horrible,” Jacob said. “We felt deep down that that was probably going to be what we heard from the doctor, but she confirmed our worst nightmare.”
Hannah moved back to Brewer last July after Ellie’s diagnosis to be closer to family. Jacob was in the military, so he traveled back and forth between Maine and Virginia before moving to Brewer permanently in November.
In October 2024, the family started posting daily videos to an account on TikTok called “Elliana’s Journey,” in the hopes of spreading awareness of epidermolysis bullosa.
Hannah said she started the TikTok account, with some prompting from a community member, for other mothers like her who might receive the diagnosis and are searching for information and answers.
When Ellie was only 2 days old and the family was told it could be epidermolysis bullosa, Hannah said she was terrified, searched the term on Tiktok and found next to nothing. She wanted to change that.
The account has gained more than 735,000 followers as of 3 p.m. on Thursday. Some of the Campbells’ most popular videos have gained millions of likes. One video in which the family visits Sand Beach in Acadia has been watched nearly 44 million times.
The videos the Campbells posted document what their daily life with Elliana looked like, including adding non iodized salt and diluted bleach to her bath water to prevent infections, giving her multiple medications throughout the day, spreading ointment on her many wounds, and bandaging her arms, legs, torso and head.
“It was a lot of trial and error throughout her life, but sometimes error led to wounds that never healed,” Jacob said.
Hannah and Jacob could almost never hold Ellie in their arms without layers of padding between them. When the parents needed to move Ellie, she had to rest on a piece of foam padding to avoid developing wounds.
“In the very beginning, we noticed she’d have wounds where our fingertips were from picking her up,” Hannah said. “Not being able to hold her was probably the hardest part, especially when your child is in pain. You want to hold them to comfort them, but that just wasn’t possible for Elliana.”
Every diaper change and bath was “excruciatingly painful” and Ellie took “an unbelievable amount” of medication to manage the pain, Hannah said. Despite this, Ellie continued to smile and babble, though the smiles became less frequent toward the end of Ellie’s life.
“Before she passed, it had been weeks since we saw her smile,” Hannah said. “It was awful to watch.”
When Ellie died, between 40 and 50 percent of her body was covered in wounds, some of which were from IVs or monitors that were placed on her following her birth that never healed, Jacob said.
In one video, Hannah shows the items the couple use each day to care for Ellie, including eight different types of bandages and wound coverings and other items, such as ointments, sponges, needles and eye drops.
The Campbells will send the remaining supplies to a family in the United Kingdom who have a daughter with the same condition as Ellie.
Though Ellie is gone, the Campbells said they’re finding comfort in the awareness they hope their videos of their daughter brought to epidermolysis bullosa. With more knowledge of the disease, perhaps a cure can be found one day, Hannah said.
“I truly believe that her purpose in life was to spread awareness so no other baby has to go through what she did,” Hannah said. “It brings us comfort knowing maybe we went through this for a reason.”
