Family Shares Tragic News of 10-Month-Old Elliana Rose's Death — What Happened?

Any time chronic health conditions afflict infants and young children, society collectively grieves while hoping for solutions so that future children need not suffer the same afflictions. Such is the case with the infant Elliana Rose Campbell, the namesake of the popular TikTok account ellianas_journey.

If you have been following Elliana's story, you know that her prognosis has left her family without much hope for their child to live beyond a year.

Below, we honor Elliana's story and share resources from the Campbell family for other families whose infants have been diagnosed with similar afflictions.

For those who are grieving their own losses of beloved children gone far too early, please consider this a trigger warning before proceeding with a story that may reopen difficult wounds.

According to the Campbell family's webpage on the EB Research Partnership, Elliana's Hope For Healing, Elliana Rose was born on May 23, 2024, and was diagnosed with Junctional Epidermolysis Bullosa (JEB).

"Tragically, with this diagnosis, it is unlikely that Elliana will live beyond her first year," per the family's webpage.

Following Elliana's diagnosis, the family moved from Virginia to Maine in order to live near family as well as be in closer proximity to the pediatric care specialists in neighboring Massachusetts.

The Campbell family has been documenting their time with Elliana Rose via TikTok, educating others about JEB and how the family has been cherishing their precious time with Elliana Rose.

By April 5, the family shared an update that Elliana Rose hadn't opened her eyes in 24 hours and that the family feared they wouldn't have much time left with her. "Please know she is safe, she is held, and she is so deeply loved," the family wrote in text overlayed in the video.

"Ellie is still with us, but her body is tired," the family explained in the caption. "She hasn’t opened her eyes, eaten, and can hardly cry. We’re holding her close and loving her through every breath.

Tragically, the family announced on April 8 that Elliana Rose had passed away the night before.

"Our sweet girl Elliana Rose lost her battle last night," the caption reads. "She passed peacefully, 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.

Junctional Epidermolysis Bullosa is referred to by the acronym JEB, though some resources use the acronym EB. According to the Mayo Clinic, the condition causes fragile and blistered skin.

Blisters appear easily, and may even happen inside the mouth or stomach. Although it most often displays in infants and young children, per the Mayo Clinic, the inherited condition may remain dormant until the person reaches young adulthood.

"Individuals with EB lack critical proteins that bind the skin's two layers together, causing the skin to tear apart, blister, and shear off, leading to severe pain, disfigurement, and internal and external wounds that may never heal," according to the Campbell family's webpage.

Relating the skin sensitivity of children with EB to the fragility of a butterfly's wing, those suffering from the 1-in-50,000 disorder are called "Butterfly Children" per Cincinnati Children's Hospital Medical Center.