Erica can't pick up her baby without fear of tearing off her skin: 'She was in pain and screaming'

This time last year, Erica had never heard of epidermolysis bullosa (EB), a rare genetic disease that affects about 1000 Australians.

Now, it's the reason over $10,000 worth of bandages and medical supplies turn up on her doorstep every month.

It began when Erica's daughter Ella was born with red-raw patches of missing skin on her feet and knees.

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Doctors spotted the red-raw wounds as soon as the newborn was delivered and immediately knew something was wrong, so Erica only got to hold her daughter for a handful of seconds before she was "whisked away" to NICU.

"I was separated from my newborn baby for so many hours knowing something was wrong, but not actually having any detail about what that was," she tells 9honey. 

When doctors finally came to her with answers, it only confused her and husband Tom even more.

Erica was informed her daughter had EB, a rare genetic disease that left her with skin so fragile, any friction or impact could cause painful blisters and open wounds. It affects less than one in every 20,000 children in Australia.

"She had pretty significant amounts of skin missing in certain places, so I knew it wasn't a mild thing," Erica says.

"But in no way did I actually understand the severity of what that meant."

At first, she assumed she'd just have to be more careful with her newborn daughter's skin, but she quickly realised even gently cuddling her baby could tear her delicate skin and leave Ella covered in painful blisters.

Those blisters could then become open wounds, which had to be carefully treated, dressed and bandaged every single day to prevent infection. 

Soon, reality kicked in - this disease was going to change the family's life forever.

"My brain went into overdrive, thinking about what life is going to be like for her," Erica says. 

"Will she be able to go to childcare? Will I ever be able to go back to work? I catastrophised."

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After almost three weeks in hospital and countless "scary" Google searches, Erica was sent home with a bandaged baby and no roadmap on how to handle the next week, month, or year with her. 

Erica and Tom quickly learned that to survive, they'd just have to take each day as it came.

They learned to clean and dress wounds, to put Ella's clothes on inside out so the seams didn't tear her skin, to cut the elastics out of nappies and avoid certain fabrics altogether.

Ella's wounds needed to be checked and treated daily, and just bathing her could take up to four hours with all the special care her skin required.

"It's super confronting, because you're inflicting pain on [her] as well," Erica adds, "every time you changed her dressing, she was in pain and screaming."

Ella also has an older brother, Archie, who suddenly came second to his sister's needs - something Erica fears will affect him long-term.

But she and Tom had to focus on caring for Ella, keeping her wounds clean and preventing more from forming when she started moving around and crawling.

The cost of constantly stocking up on special bandages and wound care supplies - as well as 'EB-proofing' Ella's car set, high chair, pram and cot - has been astronomical.

"Her monthly order of bandages would be well over $10,000," Erica reveals, and would have put the family into crippling debt if not for support from DEBRA Australia.

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A non-profit supporting Aussies living with EB, DEBRA helped her access the government-funded National EB Dressing Scheme, which provides a monthly supply of dressings to EB patients for a fraction of the cost.

Erica pays $31 a month for Ella's supplies and has also accessed specialist counselling, peer support, and in-home nurse to help with Ella's care through DEBRA.

The organisation has been a "lifesaver" while the family waits for Ella to be approved for NDIS support. They've been waiting close to 10 months now.

"It's really frustrating because all the health professionals say that the first 12 months having a baby with EB is the hardest, and that's the period of time when you don't have that intensive level of support that you need," Erica says.

"It's a systems issue that needs to be looked at."

As Ella's first birthday approaches, her mother fears what her uncertain future might hold.

Strangers already stare at Ella's bandaged hands and feet when they're out in public and the weight of those stares will only grow heavier as Ella gets older.

Sometimes Erica tries to educate strangers who ask what's "wrong" with her daughter, but a lot of the time she just doesn't have the emotional capacity for it.

"I'm not ashamed of her. We didn't choose this," Erica says, "but I really worry about that for her in the future. We've got a rough road ahead."

There's no cure for EB and treatment focuses more on relieving pain, preventing infection and providing dressings than long-term issues like scarring and mental health implications.

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Support services for the estimated 1000 Aussies with EB are limited, which is why families like Ella's rely so heavily on DEBRA, which in turn relies on donations to continue its vital work.

"All I want for Ella is to have a good quality of life."

DEBRA Australia is the charity that works tirelessly to support people and families living with EB. Learn more and donate here.

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