When Kida's children were born with 'butterfly skin', doctors suggested an exorcism.

When Kida and Aiman Azny welcomed their first child into the world, they were excited to be able to hold their little girl close.

Instead, Siddiqah was born missing skin on about 75 per cent of her body.

The couple and their doctors were stunned. It turns out they were unknown carriers of a mutated gene that causes epidermolysis bullosa (EB), a rare skin condition that causes skin to blister at the slightest touch.

EB — often referred to as butterfly skin, as it makes skin as fragile as a butterfly's wings — affects half a million people worldwide, and has been likened to living with third-degree burns.

Sneezing, running, even bumping into a passing stranger can tear the skin.

Hearing what her daughter's life would look like crushed Kida.

"It's like you've been hit by a tonne of concrete. Your life is basically squashed," she told Mamamia.

"People think it's just skin, but imagine living with burns all over your body throughout your life."

To make matters worse, the concerned mother was left to her own devices when it came to learning more about the condition, as doctors in Malaysia offered little support.

Recessive dystrophic epidermolysis bullosa can cause scarring that fuses fingers together. Image: Supplied.

Dismissed and desperate.

When Kida fell pregnant with her second child, Azraqee, she worried that he would also be born with EB. But Kida's concerns were dismissed by healthcare professionals.

"He was born without any missing skin, but a minute into the doctor and nurses handling him… the skin just [came] off, even though we'd spoken to them and told them it could probably happen," Kida said.

"That was very frustrating and very disappointing for the both of us."

It was only after this that the parents realised genetic testing for EB was an option. Soon, Kida and Aiman discovered they were carriers.

Siddiqah and Azraqee have recessive dystrophic epidermolysis bullosa, which affects them everywhere, even internally. They also scar from their EB injuries, which can lead to impaired movement.

Each day, the parents spend hours dressing their children's wounds and changing their bandages.

"Just like how you clean a person with burns, that's happening every day since they were born," Kida said.

"They're affected internally as well. Any friction from swallowing, from eating, from drinking, from sneezing can cause tearing of the esophageal."

Kida's family moved to Sydney in 2017 to find better support for her children with epidermolysis bullosa. Image: Supplied.

Searching for support.

While the condition is rare, Kida found that the doctors in Malaysia were almost useless in providing support.

"They tried to explain to us what EB was [by rubbing] a pen [on] my children's skin in front of me so it came off. You could've just explained it to me or drawn something instead of physically hurting my children," she said.

"The medical community there have an idea that we should go to a witch doctor. We should have an exorcism. That's their belief system."

The family couldn't access the treatment they needed in Malaysia and realised they needed to turn elsewhere.

In 2017, they moved to Australia for a clinical trial and haven't looked back since.

"People here understand more about the need and the care for my children's conditions," Kida said.

But there's still more work to be done in raising awareness.

Up to 1,000 people are living with a type of the disease in Australia, according to not-for-profit DEBRA Australia.

DEBRA supports people living with EB and says urgent research is needed to develop therapies that address the condition. But first, more funding is needed.

Siddiqah and Azraqee's parents try to make sure they live 'normal' lives. Image: Supplied.

Between the dressings and specialist appointments, Kida does her best to help her kids have normal lives.

"They're happy kids, very funny kids… We try to focus more on living life than the negative side of the condition," she said.

But the family's visa status means they can't access certain care, Kida said. They're seeking asylum due to the mistreatment by medical professionals in Malaysia and have spent five years anxiously waiting for answers.

"I feel that my children have all the rights to get the best chance in life," Kida said.

"The way my children were treated is not on par and was not right."

For more support for epidermolysis bullosa patients and resources about EB, visit debra.org.au.

Feature image: Supplied.