AT TWO years of age, Nambucca Heads’ Monroe Mills should have the world at her feet with plenty to look forward to.
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Sadly, her life is severely hindered by a rare form of a condition – photoaggravated eczema – which means any sun exposure leaves Monroe covered in rashes.
Not only does she break out in a rash that is intensely itchy, Monroe will become lethargic and will barely eat.
She has spent lengthy periods in hospital and her mum, Sarah, has tried everything under the sun to relieve Monroe’s pain.
“I’ve done absolutely everything I can – tried every treatment, every cream,” Sarah told the Guardian. “Every day she wears suits and wet bandages smothered in creams.
“Now, Monroe has developed a fear of creams ... it doesn’t matter what I am applying she’s traumatised each time.”
The process is taking its toll on Sarah, being unable to leave Monroe alone, and she also has a special needs son … the level of care is “massive”.
“Monroe would scratch and cry the whole night, the sounds she made tore my heart in two,” Sarah said. “I felt helpless looking into her tiny eyes knowing nothing I did could help.
“I couldn’t leave her alone for even a minute as she would tear her skin to pieces … anytime she did nap I would find her soaked with blood from her scratching in her sleep.”
Sarah’s son, Hendrix, is autistic and the constant trips to hospital, breaking routine and structure is “traumatic”.
It came as a shock to the Mills family knowing there isn’t as much help and information out there as first thought.
“It was depressing, knowing there was more to it and constantly being sent home from the hospital being told she’ll be fine,” Sarah said.
“Not many people wanted to listen to my theory, I was continually presented with information about eczema, what to cut out etc.
“I know her trigger now, so until we can find something more suitable, we have to avoid the sun as much as possible.”
Despite the disability, the two-year-old has a ready smile.
“She is constantly suffering infections, and is always in discomfort, kept awake trying to scratch – yet she has the bubbliest personality,” Sarah said. “She truly is a sweetheart.”
Next on Sarah’s list of things to try for her daughter is a special suit, made by the company Second Skin. But there’s a catch, they are aimed at burns victims, and cost $1500.
“There are no guarantees it will work, but I have to try,” Sarah said.
* There was a barbecue at Macksville Woolworths on Friday run by members of the Nashos, in a bid to raise money for the suit. Monroe was there between 9.30 and 10.30am. Check out Monroe’s Facebook page: https://www.facebook.com/miracleformonroe.