Influencer mum announces the death of her 10-month-old baby daughter who had a rare skin condition

Hannah Campbell’s baby daughter Elliana Rose died on Sunday, (April 6), and the grieving mum shared the news of the tot’s death on her TikTok page the day after.

“Our sweet girl Elliana Rose lost her battle last night,” Campbell shared on Monday, (April 7). “She passed peacefully last night, wrapped in love. I don’t know what to do with myself today.”

Elliana had suffered from epidermolysis bullosa, known as EB, a group of rare inherited skin disorders that cause the skin to become very fragile, according to the NHS. Any trauma or friction to the skin can cause painful blisters. Babies born with the condition are called “butterfly children” because their skin is so delicate.

EB is caused by a faulty gene that makes skin more fragile. A child with EB might have inherited the faulty gene from a parent who also has EB. Or they might have inherited the faulty gene from both parents who are carriers but don't have EB themselves. The change to the gene can also happen by chance, when neither parent are carriers.

There's currently no cure for EB, so treatment aims to relieve symptoms and prevent complications developing, such as infection.

Campbell, who is a mum-of-two and also shares an elder daughter called Ember with her husband Jacob, went on in her Instagram post: “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.”

Campbell used her TikTok page as a platform to raise awareness of the condition and frequently shared the highs and lows of Elliana’s day-to-day life. She posted videos of the little one bonding with her older sister, Ember, celebrating her 6-month birthday, enjoying the snow and watching fireworks explode over Disney World’s Cinderella Castle.

Recently, Elliana’s health had taken a turn for the worse. In late March, Campbell shared a clip of her daughter drinking from a bottle while struggling to keep her eyes closed. “Ellie’s body is slowing down, and we’re staying by her side, giving her all our love,” she said at the time.

Over the weekend she then shared a video of her baby sleeping in a bouncer. She wrote: “Ellie is still with us, but her body is tired. She hasn’t opened her eyes, eaten, and can hardly cry. We’re holding her close and loving her through every breath.”

Shortly after Elliana’s birth, in May 2024, she was diagnosed with junctional epidermolysis bullosa, the rarest form of EB which is also often severe. A donation page was set up for her on the EB Research Partnership website. A statement on the website read: “Tragically, with this diagnosis, it is unlikely that Elliana will live beyond her first year.”

The page also noted that after Elliana was diagnosed, she and her family made the decision to leave their home in Virgina, United States, and relocate to their hometown in Maine, US. This move was made be closer to family members and also a specialised medical care unit in Massachusetts, US.

The fundraiser, which was organised with the aim of providing support to Elliana and other babies facing similar health conditions, raised more than $13,000.

There were many messages of condolence written on Campbell’s TikTok page. One said: “All mums are crying today. My condolences to your family.” One other person said: “I’ve tried so hard to think of something comforting to say, but I have no words. It’s not fair. No mother should have to bury their baby and I’m so so sorry. You were loved by so many, sweet Ellie.”