When Julie Given gave birth to her daughter, Victoria, in January 2024, she expected to cradle her in her arms and soak in every second of being a new mum.
But that moment never came.
Within seconds of delivery, nurses noticed patches of missing skin on the newborn’s tiny hand and foot. Alarm bells rang immediately.
The baby girl was whisked away to an incubator and Julie, desperate to hold her daughter for the first time, was informed she could not touch her.
Even the gentlest caress could have injured Victoria.
Doctors correctly suspected that Victoria had Epidermolysis Bullosa (EB) – a rare, incurable genetic disorder that makes the skin so fragile it can blister or tear at the slightest friction.
Julie, still reeling from childbirth, was told her baby needed to be transferred to Sydney’s Royal Women’s Hospital.
In shock, exhausted, and hundreds of kilometres from home, she found herself isolated in a ward, uncertain where she could stay or whether she could even be with her child.
When Julie Given gave birth to her daughter, Victoria, in January 2024, she expected to cradle her in her arms and soak in every second of being a new mum
Within seconds of delivery, nurses noticed patches of missing skin on the newborn’s tiny hand and foot. Alarm bells rang immediately
Doctors correctly suspected that Victoria had Epidermolysis Bullosa (EB) – a rare, incurable genetic disorder that makes the skin so fragile it can blister or tear at the slightest friction
‘I just wanted to hold her and tell her everything was going to be okay,’ Julie said.
‘But I wasn’t allowed. Even caressing her forehead could hurt her. I was very upset. I needed her.’
It took two days – and an emotional breakdown in front of a social worker – before Julie was finally allowed to hold her daughter.
‘I was so in love,’ she said.
Today, Victoria is a bright, cheeky toddler with an infectious smile – and a daily routine that would overwhelm most adults.
Every morning starts with a careful inspection for new blisters.
Wound care is planned around her moods because if she’s upset or restless, the process can be excruciating.
Baths are sometimes replaced with sponge washes to avoid irritation. Even a playful rub against her skin can cause it to tear.
Today, Victoria is a bright, cheeky toddler with an infectious smile – and a daily routine that would overwhelm most adults
Julie admits that some wounds look devastating at first but heal surprisingly well. Other times, she fears the worst
‘You constantly have to be looking her over or vigilant when handling her, because a blister can happen that quickly,’ Julie explained.
Dressing changes are often traumatic.
‘There are hard days when she’s crying and I have to stay strong. Sometimes my eyes will tear up, but I wipe them away and tell her everything’s going to be fine,’ Julie said.
‘Still, I remember hoping it was an illness that would go away when we first encountered it. I still hope that, and dream of Victoria being happy and thriving.’
Julie admits that some wounds look devastating at first but heal surprisingly well. Other times, she fears the worst.
‘The hardest moment is the not knowing. Never knowing what to expect,’ she said.
EB is not something that goes away – and the junctional form, which Victoria has, can be life-limiting.
‘It’s the most painful, torturing disease a child could have,’ Julie said quietly.
‘There are hard days when she’s crying and I have to stay strong. Sometimes my eyes will tear up, but I wipe them away and tell her everything’s going to be fine,’ Julie said
Despite the pain, the bandages, and the constant medical vigilance, Julie softens when she talks about her daughter’s personality.
‘She’s the happiest, funniest little girl. She loves The Wiggles and Paw Patrol. She dances. She’s cheeky. She’s beautiful.’
Julie rejects the idea that she missed out on the baby she’d hoped for, but revealed quiet fears about the future.
‘[Having a sick child] is difficult on a relationship. It makes you second guess whether you want another baby. My husband and I have talked about it, but for the moment we’re just going to be there for Victoria the best we can,’ she said.
‘She may have a skin condition, but I still love her and she makes me happy. It’s made me stronger and braver.’
Despite the pain, the bandages, and the constant medical vigilance, Julie softens when she talks about her daughter’s personality
Few people have heard of EB. Julie calls Victoria her ‘butterfly baby’ – a reference to how fragile their skin is.
She patiently explains to friends and strangers how any bump or friction can cause blistering, sometimes even inside the mouth or throat.
There is no cure, only wound care and pain management.
Julie has found some comfort in connecting with other EB parents online.
‘It’s really nice there is that support out there,’ she said.
‘Even parents who don’t have EB children understand.’
But her biggest hope is that the world will see Victoria for who she is – not just her condition.
‘EB is part of her, but it’s not all she is. I hope people can look past it and see the little girl I see.’
What is Epidermolysis Bullosa?
Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes the skin to be extremely fragile.
Even minor friction or trauma can result in painful blisters and open wounds.
There are several types, ranging from mild to severe, with symptoms that can also affect internal linings such as the mouth, oesophagus, and airways.
Children with EB are often referred to as ‘butterfly children’ because their skin is as delicate as a butterfly’s wings.
The condition is incurable, but treatment focuses on wound care, infection prevention, and pain management. In severe forms, EB can be life-limiting.
Julie shared her daughter’s story to spread awareness about Epidermolysis Bullosa. You can donate to her fundraiser to help with medical costs in the bullet points.
