Hannah Campbell, a well-known internet influencer, recently revealed the heartbreaking news of her 10-month-old daughter, Elliana “Ellie” Rose, who tragically passed away on April 7, 2025. In an emotional video shared on TikTok (@ellianas_journey), she expressed her profound grief:
“In loving memory of Ellie. 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. JEB 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.”
The cause of Ellie’s passing was identified as junctional epidermolysis bullosa (JEB), a rare and severe skin condition characterized by fragile and blistering skin, often referred to as a “butterfly disease” due to its delicate nature.
Understanding Hannah Campbell’s Journey
In a subsequent TikTok post, Campbell detailed her daughter’s struggles with epidermolysis bullosa, emphasizing the various forms of this condition. She specifically noted that JEB is recognized as the most devastating variant of this disease.
“Severe JEB often takes lives way too soon, and even the ‘milder’ form still causes daily pain, wounds, and lifelong challenges. 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,”she stated.
Throughout her battle with JEB, Hannah Campbell chronicled the extensive medical care required for Ellie, including constant wound management, specialized medical supplies, and equipment tailored for her comfort and safety. She shared vital treatments that included nebulizer use, humidifiers, and electrolyte intake, to ensure Ellie remained hydrated and as pain-free as possible.
As Ellie’s condition deteriorated, Hannah provided her followers with poignant updates. She shared that Ellie had not opened her eyes or eaten for days, stating:
“Ellie is still with us, but her body is tired… We’re holding her close and loving her through every breath. Please keep her in your heart,” she wrote.
Hannah also mentioned transitioning Ellie from the NICU to hospice care, emphasizing the emotional strain they were navigating together as a family.
On March 31, 2025, Hannah provided another heartfelt update via TikTok, noting that “Ellie’s body is slowing down.”In a moment shared with her community, she expressed gratitude for their support.
“Ellie’s body is slowing down, and we’re staying by her side, giving her all our love. Thank you for being part of her journey and holding us in your hearts,”she wrote back then.
Prior to this heartbreaking chapter, Hannah often showcased family adventures, trips, and joyful moments, proving her resilience and commitment to making every day special for Ellie and her family.
“Making every moment an adventure, knowing each one is a gift. Filling her world with as much adventure as we can, for as long as we can,”she noted in a post highlighting a picturesque family getaway to a snowy lake.
Hannah has been an active advocate for raising awareness about JEB since Ellie’s diagnosis at just two weeks old. She created viral content documenting milestones such as Ellie’s six-month birthday, family karaoke sessions, and a magical trip to Disney World, all while emphasizing the need for more awareness about this devastating disease.
In her mission to help others facing similar challenges, Hannah initiated a GoFundMe campaign, titled “Elliana’s Hope for Healing,” aimed at supporting infants affected by comparable medical issues. The initiative aspires to fund research efforts to find cures for EB/JEB by the year 2030, ultimately striving to assist over 400 million patients globally.
As a content creator, Hannah continues to share insights on lifestyle, beauty, and parenting through her TikTok and Instagram platforms, all while navigating the complexities of family life and fostering greater understanding of rare conditions.