When a baby is born with Epidermolysis Bullosa (EB), the lightest touch can be the cause of great pain, and everyday moments can become great medical challenges. This rare and devastating genetic skin condition causes the skin to blister and tear at the slightest friction, it can cause wounds that never heal, and skin infections that can lead to sepsis and even death. Caring for a child with EB is not just complex, it is also constant.
Affecting the body’s largest organ, the skin, children with EB are often referred to as ‘butterfly children’ because their skin is as delicate as butterfly wings. The simple act of a hug can tear their fragile skin – making the thought that a parent’s first embrace of their newborn could cause harm a heartbreaking and unimaginable reality. In its most serious forms, the condition extends beyond the skin, affecting the internal linings of the mouth, throat, eyes, and digestive tract.
At The Royal Children’s Hospital (RCH), Clinical Nurse Consultants (CNCs) are more than medical professionals – they are lifelines – because caring for children with EB is intricate and intensive. They are often the first point of contact for families, providing highly specialised expert care, unwavering support, and guidance through the painful and unpredictable journey of EB.
Often described as one of the worst diseases that you’ve never heard of, Epidermolysis Bullosa is among one of the most demanding and delicate conditions cared for at the RCH. For more than a decade, the hospital’s EB expertise relied heavily on Lauren Weston – the single dedicated EB Clinical Nurse Consultant at the RCH.
Now, to ensure this vital expertise is preserved and passed on, the RCH Dermatology Department has established a dedicated EB Nurse Training Fellowship – supporting and safeguarding the future of specialised care for some of the hospital’s most vulnerable patients.
Earlier this year, Erin Sullivan stepped into the new EB Nurse Training Fellowship role – a one-year program designed to build capability and capacity in this uniquely specialised field.
“Our goal is to keep these children well and out of hospital. Most care happens at home, and these families carry an enormous burden. Our role is to ensure they are supported, and that care remains consistent and safe,” Erin said.
Children with EB require highly coordinated, multidisciplinary care involving dermatology, paediatrics, palliative care, ophthalmology, gastroenterology, dentistry, pain services, psychology, and allied health. Clinical Nurse Consultants play a pivotal role, acting as the critical link between families and the hospital system. They coordinate appointments, educate clinical staff, and liaise with community care providers. During admissions or procedures, they are hands-on to ensure safe handling and appropriate wound care.
“There is no role or one person that’s more important than the other. However, when you ask a family, it’s generally the Clinical Nurse Consultants that they reach out to. That’s because we are accessible, we know who to ask questions to. A lot of this role is communication with these families, offering social and emotional support as well,”
said Erin.
The RCH provided care for 79 children with EB and fragile skin related conditions over the past financial year.
Thanks to philanthropic support from DEBRA Australia, which has been supporting the RCH since 2013, the EB team now has the added capability and capacity needed to meet growing demand and reduce reliance on a single nurse.
“This initiative represents more than one role; it’s a commitment to developing ongoing expertise and compassionate continuity of care. It reinforces the vital services EB families rely on and reflects our shared dedication to advancing care through clinical leadership and a sustained model of support for EB families,” said Simone Baird, National Family Support Coordinator at DEBRA Australia.
With the addition of the EB Nurse Fellowship, there is vital continuity to a specialised service that families depend on daily. This funding has enabled the team to grow its expertise, enhance the quality of care, and ensure no family faces this extraordinarily complex journey alone.
“This job has been life changing. I’ve worked in nursing for years, but I don’t think I’ve ever been this fulfilled. The families, the team, the connection, it’s unlike anything else,” said Erin Sullivan.
This program is supported by DEBRA Australia.