By Josh Saunders
An adorable girl has defied death three times battling the deadly scaling condition that causes her to shed the skin all over her body that could kill her at any minute.
Maddie Preston, 9, from Burleson in Texas, USA, undergoes a daily three-hour routine to remove dead cells from her body and reduce the chance of a fatal infection or MRSA.
She has Epidemolytic Ichthyosis, meaning her skin can grow up to ten times faster than normal, peels and can become so extremely dry that she’s unable to move.
Mum-of-two Emily, 42, was told her daughter would not survive after she was born due to her high risk of infection but since then the little girl has beat another two lethal battles.
Thanks to the daily diligent scrubbing off of Maddie’s scales, moisturising and treating wounds she’s defied expectations and lives a normal life.
Despite being confused for a ‘burns survivor’ due to the reddish appearance of her skin and often being stared at by strangers, Maddie proudly explains her condition to others.
Emily, full-time carer, said: “It was visible at birth that she had ichthyosis and shortly after that all the layers of skin fell off in her sheets, she was bright red and looked like a burn victim.
“The ER doctor told us, ‘You realise your baby maybe not survive?’ it was very scary she was touch and go for the first two weeks.
“Ichthyosis can be deadly when a baby is first born, Maddie needed to remain hydrated, stay infection free and quarantined, we even had to put on gloves to touch her.
“She has one of the most severe forms of the condition, requiring aggressive and painful treatment administered for up to three-hours every day.
“The build-up of scaling is her worst enemy, the more it layers up the more likely she is to have skin infections, can’t bend or move.
“Each hour that goes by, her skin gets harder for her to move, she gets drier and starts to flake-off.
“There are days where she can barely move, the most affected part is her feet, any friction causes blistering, even socks and shoes affect her.
“We have a daily battle with her blisters and her not being able to walk, these are open wounds so we have to work tirelessly to stop them from getting infected.
“If she has an infection on her feet, time can be critical to get it curated, she has been hospitalised for severe infections and the most dangerous type of MRSA.
“If it’s not dealt with immediately with antibiotics, the infection could get into her bloodstream and she could lose limbs or die from this.
“But in spite of everything Maddie’s going through she is an extremely happy and positive girl who loves to help others and is determined to raise awareness.”
After being born early 33-weeks, Maddie was diagnosed with Epidermolytic Ichthyosis – a condition that affects one in 200,000 people.
She was rushed to intensive care where she was put into isolation to avoid her contracting a deadly infection.
Emily said: “She had a collodion membrane, which is a very thick white skin, you could tell it was something very different from a normal birth.
“Immediately after that, all of her skin in its entirety started falling off in the sheets, she looked like a burn victim.
“I wasn’t allowed to hold her until she was seven days old in an isolation room, no one was allowed in there but me and immediate family using gloves and masks.”
After just under a month, she was released from hospital and her mum had to adapt quickly to her daughter’s extensive skin routine.
Despite Emily having ichthyosis herself, Maddie’s is a much more severe form and requires a rigorous three-hour bathing and moisturising ritual.
Emily said: “Before her routine the skin is white, very scaly, extremely dry and itches a lot.
“Without the routine, she wouldn’t be able to walk, the skin build-up would be very thick, the odour would be bad and she could die from infection.
“One day in the bath we use diluted bleach and the next baking soda, it helps soften and soothe her skin, it’s very calming, helps with itching and reduces the build-up of scaling.
“We have to get as much of her scaling off through scrubbing every morning so that she isn’t restricted as much, every hour her skin gets drier and begins to crack.”
The daily build-up of skin not only risks infection and causes a lot of pain, but also affects her ability to move which has required hours of therapy to help with.
Emily said: “Everything we take for granted cannot be done by Maddy without a lot of practice or determination.
“Before she couldn’t open a bottle of water or barely grip a pencil because of the skin build up, so she needs weekly occupational therapy.
“Despite this she puts a brave face on in her videos because she wants to raise awareness and is a very happy child
The family are determined to inform others about ichthyosis in the hope of reducing the stigma surrounding the condition and to hope someday a cure is found.
Emily said: “Bullying is a big deal for her, she goes through a lot of stares and teasing, kids get nervous seeing her skin shedding and bully her about her odour caused by the skin build-up.
“It’s hard to watch as her mother, seeing people stare at her and look with disgust, it’s very disheartening which is why we try to speak out.
“Maddie wants to help children in general to stay motivated and positive, we try to teach others that it’s ok to be different.”
Single-mum Emily is fundraising for her daughter’s care, they have been rejected disability allowance.
She said: “Maddie’s condition is very obvious when you meet her you can see she has unhealthy skin, it’s been very challenging.
“As a single mom without a lot of support for her condition and other children to take care of too, it’s very hard for us, ichthyosis is very financially draining and a strain.
“But we try to stay as positive as we can and take each day as it comes, in the hope one day there will be a cure.”
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