TikToker Hannah Campbell loses 10-month-old daughter to rare skin disorder
On April 8, Hannah Campbell — who gave birth to Elliana Rose in May 2024 — shared a TikTok video in memory of her daughter, who died the night before.
'Our sweet girl Elliana Rose lost her battle last night. She passed peacefully, wrapped in love,' Campbell wrote in the video's caption. 'I don't know what to do with myself today. I'm heartbroken, and I'm angry.'
Elliana Rose was diagnosed with a rare and highly severe condition called Junctional Epidermolysis Bullosa (JEB) at 2 weeks old.
Campbell has documented her daughter's battle on TikTok since September to help raise awareness for the disease.
'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 added in the caption.
According to DermNet, epidermolysis bullosa (EB) is 'a group of inherited diseases that are characterised by blistering lesions on the skin and mucous membranes.'
The painful blisters can appear anywhere on the body and form from the slightest touch. It affects both the external and internal well-being of the individual.
'An estimated 1 in 50,000 people in the United States' have EB, according to Cleveland Clinic. While there is currently no cure for the disease, some patients can see their condition improve with age.
In a March TikTok video explaining her daughter's condition, Campbell wrote that the disease 'causes daily pain, wounds and lifelong challenges.'
She noted that her daughter requires 'constant wound care, special medical supplies and adaptive equipment to keep her comfortable and safe,' per E! News.
'There is no cure, but there is hope,' Campbell added. 'Every child with EB deserves a future without pain. Spreading awareness leads to research, treatments and one day a cure.'
Campbell's latest update came just a few days after posting a video explaining that her daughter 'hasn't opened her beautiful eyes in 24 hours.'
In the caption, Campbell added that Elliana was '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,' she wrote.
In addition to using her TikTok to spread awareness to her more than 700,000 followers, Campbell founded Elliana's Hope for Healing — a fundraiser that hopes to find a cure for EB by 2030.
On its official website, Campbell wrote that it was 'unlikely Elliana will live beyond her first year.'
'This fundraiser is being organized with the aim of providing support to Elliana and other babies facing similar health conditions,' Campbell wrote on the website.
Campbell created the fundraiser with EB Research Partnership (EBRP), which was co-founded in 2010 by Jill and Eddie Vedder — the frontman for Pearl Jam — after their friend's son was diagnosed with EB.
According to EBRP, Elliana was one of more than 400 million children and adults battling EB.
'Over the last decade, EBRP has made remarkable strides, including helping to accelerate the first two EB treatments FDA approved in 2023,' the nonprofit wrote on its website.
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