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'My Baby Is Nine Months Old And I Have Never Been Able To Hug Her'

When Alarna Gordon gave birth to her first child, Alexis, in March she knew immediately that something wasn't right.

As the 26-year-old was handed her newborn for the first time, she noticed wounds -- some weeping -- all across her tiny body.

"It was scary," Gordon told 10 daily.

"At first nobody knew what was wrong. The nurse on duty at the time tried to calm the situation down by telling us that sometimes when babies are overdue, their skin peels before they're born".

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The Diagnosis

It would be another 14 hours before she and her husband finally learned what was wrong with their daughter.

"She ended up having to go to the NICU overnight," Gordon explained.

"Then in the morning the doctor came to her bedside and told us she had Epidermolysis Bullosa or EB".

EB is a rare genetic condition caused by a lack of protein in the blood, where the skin blisters and peels even at the slightest touch. According to The Royal Children's Hospital in Melbourne, EB is rare, and it is estimated less than one in 20,000 children has some form of the disease. Often there is a family history of the condition.

Lauren Weston, who is an EB nurse consultant at the hospital, told 10 daily sufferers are usually in constant pain with some describing the condition as living with third-degree burns.

"It's very confronting for parents to be given that as a diagnosis," she said.

"It's a very unusual disease, so even when parents are given the diagnoses they've usually never heard of it and don't know what it entails."
The Aftermath

After the diagnosis, Alexis was transferred from Liverpool Hospital to the Sydney Children's Hospital at Westmead, where "the game totally changed".

"When we got there we were greeted by a dermatologist who understood the disease and made it seem so manageable," Gordon said.

"All of a sudden we were comforted and told that everything would OK and that we could manage this and our mindset around it all totally changed".

Weston explained that once a child has been diagnosed with the condition, parents are educated on how to care for their wounds on a daily basis.

"There’s extensive wound care that’s needed," she said.

"So they have to be taught that. That’s confronting in itself."

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For Alarna, learning how to dress her daughter's tiny, weeping body was difficult at first, but is now simply part of their day-to-day routine.

"In the morning we take all her clothes off and do an FBI -- which we call a Full Body Inspection -- to check if any new blisters have come up overnight and then wrap her skin where the wounds are," she said.

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"At night is when the routine comes in. We get home from work and then get the bath ready. We have to fill it with either salt or diluted bleach to help stop any infections."

"Usually, we bathe her for around 10-15 minutes every night and it's during her baths that we have to lance any new blisters that have grown during the day. Then we wrap her again."

The Life Of A Sufferer

"They are in constant pain," Weston said. "But, they have such an incredibly positive disposition -- it's just amazing".

For Alarna, one of the hardest parts of caring for a child with EB is figuring out when to administer pain relief.

"She’s currently not on any pain relief and she doesn’t seem to be in any pain," she said.

"But if we notice she's suffering we will give her a combination of Panadol and Nurofen, and if it gets really bad we will go to the hospital the doctors can administer stronger pain relief medication."

Sadly, Alarna admitted because Alexis' skin is so sensitive, she has never been able to hug or cuddle her like a normal baby.

"We can't rub, or cuddle or tickle her like you would a normal baby," she said.

"It's more of a gentle pat. But I’ve learned to adapt to how I need to treat her. Even if I was to hold another baby -- I do exactly the same thing with them because that’s what I know now."

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The Future

Alarna said "not a day goes by" that she doesn't think about what living with the disease means for her daughter's future.

"My worst fear is that because she has a lot of scars over her body people will think she's having trouble at home -- you know,  kids that are five or six, they won’t understand."

But for Weston, who has been working with families of EB sufferers for five years now, the future is bright.

"They are amazingly resilient," she said. "From the families I've worked with, they enjoy a normal life. The thing is, living with this is all they've ever known and it never stops them from doing things. If they really want to do something but it means they're going to get blisters or suffer some trauma from it they won't let it stop them from going ahead."

To donate to DEBRA's Christmas appeal please click here. DEBRA Australia funds some of Alexis treatment and medical costs. 

Feature Image: Supplied