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Meet The Brave Aussie Toddler Born Without Skin On Her Feet Or Hands

Little Lylah is just two years old but every single day of her life she has dealt with a pain that most of us can't even imagine.

WARNING, GRAPHIC IMAGES:

Lylah lives with Epidermolysis Bullosa, also known as EB, a rare skin condition which means she was born with no skin on either of her feet and deep wounds that went past her ankles.

She was also born with wounds on her fingers that went all the way past her wrists.

As well as constant doctor appointments and scheduled check-ups, Lylah has to have her many blisters -- which appear on her feet, hands, face, and stomach -- lanced, cleaned and dressed almost every day.

Lylah lives with a rare skin condition called Epidermolysis Bullosa. Image: Facebook

It's painful and uncomfortable, but her mum Lara Scott says their "butterfly baby" is a fighter.

"She really doesn't let the EB, and the limitations that it has, get to her," Scott told 10 daily.

She's just your average cheeky two-year-old toddler.
Image: Facebook

Only around 1,000 people in Australia are thought to have the rare condition and it affects about half a million people worldwide.

People with EB are born without a gene that helps glue skin together, meaning any friction or rubbing can lead to large blisters and skin loss.

Scott says Lylah is lucky in some way because the particular substream of EB that she has means there's a chance her condition will improve later in life.

Image: Facebook

Lylah's father, grandfather and uncle all have EB as well.

The Sydney based family said their symptoms were even more severe than Lylah's when they were younger.

"Now it mainly just affects their feet and sometimes when they get sick, just from wiping their nose their nose will get blisters as well," Scott said.

Simply wiping Lylah's nose can cause blisters. Image: Facebook

But the condition can also be deadly.

Simone Baird's first daughter Eliza was born with severe EB in 2000 and sadly, after years of battling the condition, she passed away just before Christmas in 2017, after suffering renal failure -- a complication arising from her EB.

Melbourne based Baird knows first hand the pain that families go through having to watch their children live with EB.

"It's the worst disease you've never heard of," she told 10 daily.

It's really awful, it's a painful condition to live through and to watch your child go through as well.

Baird has spent close to two decades working with DEBRA, a not-for-profit that works to support those living with EB with anything from just having someone to talk to, right through to helping provide medical supplies.

Now, she is the organisation's family support coordinator working with over 300 families who are on DEBRA's database from all across Australia.

She said the rarity of the condition means there's a small number of people who are immediately affected and that's allowed them to become a "very tight community."

"We’ve come a long way compared to when my daughter was born," Baird said.

"There really wasn't a lot of support available for us at all. I virtually had to learn it all on my own with only immediately family support."

Now we are reaching a lot more families out there that we never knew existed.

Lara Scott said DEBRA has been a constant support for her family through their three-year journey with Lylah and it's allowed their daughter to meet other children with the condition.

Scott is also focusing on getting the message out to the wider community but said there's definitely a long way to go as most people have never heard of EB.

She said many people in the medical community also don't know how to treat it, with the family transferred to three different hospitals when Lylah was born, to find a team that could take care of her.

"We quite often get stared at in public," Scott said.

"It's not contagious. The kids are just like any other kid, they shouldn't be treated any different or given opportunities differently to what other kids are."

Now almost three, Lylah is becoming more and more independent every day and insists on dressing and lancing her own wounds.

"It's actually making things a lot easier for all of us," Scott said.

Image: Facebook

This week has been difficult for Lylah after a wound on her heel became infected, landing her in hospital.

She's now recovering and on antibiotics.

Scott said the summer months are much tougher for Lylah with her wounds becoming much worse than in winter.

But her mum said it doesn't stop her from doing what she wants to do.

Lylah is old enough to dress her own wounds. Image: Facebook

"There are days where her feet are covered with blisters, but she'll get up and walk rather than asking us to help her," Scott said.

"She's so independent, she doesn't like asking for help so if she sets her mind to doing something, she goes and does just that."

Contact the author: vgerova@networkten.com.au