We don’t think very much about the joy of having the sun kiss our skin. Of walking outside and feeling the breeze. Of slipping into a pool and floating in between the floor and the water’s surface, suspended right in the middle.
We don’t think about those things because for most of us – probably all of you reading this article right now – they are givens; the simple pleasures that are enjoyable whether you’re five or 105.
But for five-year-old Monroe Mills, it’s never been that easy.
“If we have to go outside, say on our way to the supermarket or an appointment, I’d only take her briefly, we wouldn’t go to the park,” Monroe’s mum Sarah Mills tells me on the phone from their New South Wales home.
“We don’t go out during the day, we can’t when the UV level is above about two.
“It’s so frustrating for her, sometimes if I haven’t locked the back windows of the car, I’ll catch her opening the windows and trying to stick her head out.”
It was a long road to figure out precisely what was awry with Monroe, mum-of-three Sarah tells Mamamia. For months after she was born, doctors were perplexed by her rashes and eczema, which at one point wrapped around Monroe's body so completely the only place physicians could insert an IV drip was her forehead.
Sarah's child was in so much pain she would be admitted to hospital every two weeks. Despite following doctors' orders that sunlight is the best natural treatment for eczema, Monroe's condition was only deteriorating; her angry rashes were now accompanied by welts, lethargy, joint pain, headaches, stomach aches and anaphylaxis.
After countless hospital visits, mum Sarah noticed a pattern: Her daughter would improve drastically when inside the confines of the hospital, but as soon as they got in the car to travel home, her symptoms would flare up again.
"And that's when we realised she has a sun allergy," the 31-year-old tells Mamamia.
Managing a child with any allergy is difficult, but one with Solar Urticaria? Almost impossible.
Almost of course, because for the single mum, there is no other option than to fight like hell for her daughter. Despite all the hurdles that stand in front of them, she wants her child to grow up as normally as possible.
"The first few years were hell, she just clawed at her skin because she was so uncomfortable," Sarah says. "Thankfully now we can communicate and she can tell me when she’s sore, or in pain."
If Monroe wants to play outside, this needs to be done in the very early hours of the morning or late at night; the ultraviolet light that beams down on Australia during the day with unparalleled ferocity is like poison on her skin, so her mother needs to dress her in full protective clothing and carry an Epipen in tow. Even on the hottest of summer days, Monroe is dressed in a hat, long-sleeved shirt, long pants and closed shoes to ensure not an inch of her skin is exposed.
To simply go outside presents a myriad of hurdles the average person couldn't understand.
"There are so many things that we take for granted," Sarah tells me. Like wearing shorts, for instance.
"She picked up a pair of shorts in Kmart and when I told her to put them back, because she can't wear them, she said 'Oh that’s okay Mummy, I just wanted to feel the air on my legs'. It absolutely broke my heart, so I bought the shorts for her. That night we stayed up late and went and ran outside just so she could feel what it's like."
This year will present a new challenge for Sarah's family - it's Monroe's first at school - a year that will hopefully counter the loneliness that has punctuated the little girl's life.
“It has been heartbreaking," Sarah says. "We’ve had to endure Monroe getting pointed at and laughed at as a five-month-old. To see her get upset and hear her say how lonely she is, is terrifying. It’s why I fight so hard for her. I can’t sit back and watch her suffer like this."
Luckily, the teachers and staff at Monroe's school have handled the situation with compassion and love.
“She's currently doing half days at kindergarten and before the arrived the school had tinted their windows for her and changed their lighting to LED bulbs in the library, computer rooms and classrooms."
Now, the ultimate aim is to give Monroe the tools she needs to be able to play with other children, but to do this, Sarah needs to buy two full-body suits to protect her child from the sun's rays, which will cost thousands of dollars.
And that's precisely where she needs your help.
Sarah has set up a GoFundMe page to raise money for Monroe's ongoing care, and the two suits that will allow her to play with other children at lunchtime. Hopefully, with the help of Australian parents, $10,000 will be raised to allow Monroe to live a happy, playful life.
As for any mothers who suspect their child has Solar Urticaria, Sarah recommends to "trust your motherly instinct."
"We still get a lot of people telling us [Monroe] might outgrow it, but they don't know her like we do.
"Always trust yourself and know that there will be a light at the end of the tunnel."