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.