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Influencer Hannah Campbell is mourning the tragic loss of her baby daughter, Elliana, who passed away last Monday night (April 7).
At just 10 months old, Elliana had been battling an illness known as Junctional Epidermolysis Bullosa (JEB), a rare and devastating genetic condition that causes the skin to blister at the slightest touch.
Highlights
- Influencer mourns the loss of her 10-month-old daughter Elliana to Junctional Epidermolysis Bullosa.
- Elliana's brave journey inspired the creation of a fundraiser, raising over $12,000 for a cure by 2030.
- The rare genetic condition causes severe blistering and affects mucous membranes.
- Despite heartbreak, Campbell continues to advocate for EB awareness and research funding.
“In loving memory of Ellie,” Campbell wrote in a TikTok video that broke the hearts of her 700,000 followers. “She passed peacefully last night, wrapped in love.”
Campbell’s audience had been following Elliana’s life through her updates, sharing in her daily struggles and small victories as she bravely fought against her condition—one that still has no cure.
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The influencer shared the heartbreaking news of her 10-month-old baby’s passing—she had been battling a rare and painful skin condition
Image credits: Hannah Campbell
JEB is a particularly advanced and severe form of Epidermolysis Bullosa.
The condition not only causes blisters and erosion in response to minor injuries or friction, but it also affects the baby’s mucous membranes, such as the ones found inside the mouth and digestive tract, which makes it difficult and painful to both eat and digest food.
Image credits: ellianas_journey
“No child should have to endure what she did,” Campbell wrote, finding solace in the fact that her baby wouldn’t have to suffer anymore. “I don’t know what to do with myself today. I’m heartbroken, and I’m angry.”
@ellianas_journey JEB is cruel. Every warrior deserves a cure 💙🦋 #EpidermolysisBullosa#hospice#skindisease#BUTTERFLYBABY#raredisease#baby#education♬ Graves into Gardens (Instrumental) – The Worship Initiative Instrumentals & The Worship Initiative
Through her videos, the influencer shared the daily care routines needed to keep her daughter safe and comfortable. These included constant wound care, adaptive equipment, special medical supplies, and a steady stream of medications and fluids.
Nebulizer treatments, humidifiers, and electrolyte syringes were also part of their everyday reality.
Image credits: ellianas_journey
Despite the struggles, the Campbell family embraced Elliana’s life with urgency and joy.
“Making every moment an adventure, knowing each one is a gift,” she wrote on a video documenting a lake trip where Hannah, her husband Jacob, and their older daughter Ember took a bundled-up Elliana to discover nature.
Elliana’s life inspired the creation of a successful fundraising campaign that seeks to fund a cure for EB by 2030
Image credits: ellianas_journey
March 31 would prove to be a fateful day. Elliana’s condition worsened, with Campbell posting what would be one of her last updates.
“Ellie’s body is slowing down,” she wrote. “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.”
@ellianas_journey Our sweet girl Elliana Rose lost her battle last night. 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. #ButterflyBaby#FindACureForEB#RestInPeaceEllie#flyhighangel#EBawareness#ourjourney#fyp#EpidermolysisBullosa#heartbroken#greifjourney♬ In The Stars – Benson Boone
Throughout the entire process, Elianna’s life became the inspiration for a fundraiser campaign called Elliana’s Hope for Healing.
The campaign, organized in collaboration with EB Research Partnership, has been a resounding success, surpassing its $10,000 goal and raising $12,080 through the donations of 284 supporters.
Image credits: Hannah Campbell
The campaign seeks to fund a cure for EB by 2030, offering hope to the more than 400 million people battling the disease. The non-profit was founded by Jill and Eddie Vedder, of Pearl Jam fame.
@ellianas_journey We don’t know what the coming days will bring, so today we took our baby to the beach. Cherishing every moment ♥️🦋 #OurJourney#EpidermolysisBullosa#hospice#BUTTERFLYBABY#fyp#skindisease#beach#winter♬ Graves into Gardens (Instrumental) – The Worship Initiative Instrumentals & The Worship Initiative
“Sweet Ellie has made a lasting impact on my life. This angel captured my heart from the moment I saw her story. I prayed that this sweet child would be healed. Now she is with her creator and free of pain,” a donor wrote.
“In loving memory of Elliana Rose. You have touched so many lives in your short time here. I am convinced that strides to finding a cure have been/will be made because of you! I will never forget how beautiful you are,” another said.
Despite their tragic loss, the Campbells continue to fight for a future where no baby has to suffer as theirs did
Image credits: Hannah Campbell
The grief hasn’t silenced Campbell’s advocacy. In the midst of her heartbreak, she continues to spread awareness through her platform.
“There is no cure, but there is hope,” she wrote. “Every child with EB deserves a future without pain. Spreading awareness leads to research, treatments, and one day a cure.”
Campbell’s strength—and Elliana’s short but radiant life—have left an indelible mark on thousands of followers who rushed to her fundraiser to share in the family’s pain.
“Angel Elliana: you are so loved by your family and friends and so many who didn’t even know you. The Campbells: I am so deeply sorry and cannot fathom your pain. Please know you gave her the best life you could,” one user said.
“Fly high Elliana, you’re always in our prayers. Our heart breaks for you. Rest easy now.”
Readers interested in donating to EB Research can do so by following this link.
“Pain for her is over.” Netizens empathized with the influencer, sending their condolences
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What do you think ?
Pazuzu 8 months ago
This is absolutely tragic. While I have lived through the pain of burying my child, I cannot imagine the torment this family had to go through. They put on brave faces everyday to show their child that there is beauty in the world, not just pain. Unfortunately, for this person, the worst may be yet to come. My situation common to this happened nearly 20 years ago and I am still plagued with "What-Ifs" and still get filled with grief from time to time. It's not something that will go away. A lot of people will say the pain fades with time, but it doesn't. You learn to live with it.
Tessa 8 months ago
Lot’s of strength and love to you Pazuzu, parents that carry this pain are so brave and strong every day again. My heart goes out to all parents that went or are going through this ❤️🩹
Load More Replies...
SkippityBoppityBoo 8 months ago
This is so tragic... All of it. I heard of this condition before when I was at University. It's a horrible condition to have happen to all, baby, parents... I can't even imagine. Childhood Eczema is horrendous enough with wet bandages and having to use special creams, shampoo and dietary requirements but this? It breaks your heart
LakotaWolf (she/her) 8 months ago
I'd heard of it before, but hadn't known how bad it could be until I saw some of Chris Ulmer's videos on the YT channel "Special Books By Special Kids". He's interviewed a young man with EB named John Hudson a number of times. They've in fact raised quite a bit of money for research on Epidermolysis Bullosa, and there are now new medications and treatments available. I know there are varying severities, and it is absolutely tragic that these parents had to lose a child to it.
Load More Replies...
Ellinor 8 months ago
Really ? That's the only thing you have to say from this post ?
Load More Replies... Pazuzu 8 months ago
This is absolutely tragic. While I have lived through the pain of burying my child, I cannot imagine the torment this family had to go through. They put on brave faces everyday to show their child that there is beauty in the world, not just pain. Unfortunately, for this person, the worst may be yet to come. My situation common to this happened nearly 20 years ago and I am still plagued with "What-Ifs" and still get filled with grief from time to time. It's not something that will go away. A lot of people will say the pain fades with time, but it doesn't. You learn to live with it.
Tessa 8 months ago
Lot’s of strength and love to you Pazuzu, parents that carry this pain are so brave and strong every day again. My heart goes out to all parents that went or are going through this ❤️🩹
Load More Replies... SkippityBoppityBoo 8 months ago
This is so tragic... All of it. I heard of this condition before when I was at University. It's a horrible condition to have happen to all, baby, parents... I can't even imagine. Childhood Eczema is horrendous enough with wet bandages and having to use special creams, shampoo and dietary requirements but this? It breaks your heart
LakotaWolf (she/her) 8 months ago
I'd heard of it before, but hadn't known how bad it could be until I saw some of Chris Ulmer's videos on the YT channel "Special Books By Special Kids". He's interviewed a young man with EB named John Hudson a number of times. They've in fact raised quite a bit of money for research on Epidermolysis Bullosa, and there are now new medications and treatments available. I know there are varying severities, and it is absolutely tragic that these parents had to lose a child to it.
Load More Replies... Ellinor 8 months ago
Really ? That's the only thing you have to say from this post ?
Load More Replies...
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