Most five-year-olds love nothing more than to run around outside with their family and friends without a care in the world.
But for Monroe Mills, going outside could kill her.
Monroe, from Nambucca Heads in northern New South Wales, is allergic to the sun – and is forced to wear a protective suit if she has to venture outside during the day and use glow-in-the-dark toys when she plays at night.
Affectionately known to her family as their ‘little vampire’, Monroe is allergic to ultra-violet rays which also means, on top of not being able to enjoy the sunshine without wearing a full-body suit, the little girl also can’t go anywhere with fluro lights without wearing a protective layer.
Five-year-old Monroe Mills from Nambucca Heads in northern NSW is allergic to the sun – just minutes outside during the day could kill her
If the little girl and her family, pictured here with her brother, want to do something during the day she has to wear a full body suit, mask and gloves
The little girl breaks out in welts and rashes when she is subject to UV light or if she gets too warm
Sarah Mills, Monroe’s mum, told Daily Mail Australia if her daughter is exposed to UV rays or if she overheats she comes out in welts, swells up and can go into anaphylactic shock.
She experiences nausea and vomiting, headaches, joint pain and extreme fatigue after just a few minutes in the sun.
‘She is so embarrassed about her rash – she says ‘mummy I don’t want to be the sore girl at school’ because she is so self-conscious of the stares and questions when she does have a reaction.
‘Then we go through periods where she will pick at the sores on her face because she doesn’t want them to be there and doesn’t realise that it will make them worse.’
Monroe is one of two children world-wide with such a dangerous sun allergy, according to her mother.
The picture on the left was taken when Monroe went to dinner with her family – she is wearing long sleeves and has clear zinc on but within 15 minutes she had started to swell up and her lips began to blister
Monroe pictured with Ms Monroe at Movie World – her favourite place on earth – and worth getting dressed up for
‘The doctors say it is extremely rare for a child to have this – it usually shows up in women between the ages of 30 and 40.’
‘The doctors say it is extremely rare for a child to have this – it usually shows up in women between the ages of 30 and 40.’
But her daughter has been this way since she was born.
‘She had a bit of a rash at the hospital but we were told not to worry – then when we took her home it got a lot worse.’
It took months to diagnose and it has taken years for the family to build a lifestyle around the strange and so-far incurable condition.
The young girl loves to dance – because she can wear a dress without the added protection of her body suit
Monroe mostly plays outside at dusk or after dark – she still wears long sleeves just in case but is safer at that time
The children, left, have night vision goggles which they use to play in the yard after dark – they also use glow in the dark toys and sparklers
The fluro lights at the supermarket also effect the five-year-old who needs to wear her protective suit at the shops
‘We play outside at night with glow-in-the dark toys or we go to the beach when the sun goes down,’ she said.
‘If we are going to the supermarket we have to put on the suit like we do when we need to go out during the day – or we put on long sleeves, long pants, a big hat and sunscreen.’
Monroe is about to start school – and will need to wear her full-body suits every day. Her mother is raising money to help buy two suits which cost more than $5000.
‘She will wear the suit under her school clothes – hopefully that will mean she will be able to make friends and join them in the playground.
The little girl dreams of being able to wear shorts at the beach – like her brother – and feel the breeze on her legs
Hospital visits are frequent for Monroe – she once had a very severe allergic reaction after sitting too close to an open door
The youngster has learnt to do many ‘outside’ activities inside – like roller skating
‘She grows so quickly so we have to buy new suits a lot which is why we are asking for help,’ she said.
Monroe lives in a controlled environment – there is tinting on the windows at home and the air conditioner keeps her home under 20 degrees to stop heat-related reactions.
‘The school have been great and have tinted the windows in the classroom so she can be in there.’
Monroe has made friends with the little girl in the UK who shares her condition – the two girls enjoy making videos for each other and hope to meet one day in person.
In the meantime Monroe hopes she will be able to take on school, make friends outside her own family circle and find ways to reduce the severe reactions caused by her allergies.
Monroe’s first suit made by hospital staff – a suit was also made for her doll to help her get used to being covered up
Monroe hopes she will be able to take on school, make friends outside her own family circle and find ways to reduce the severe reactions caused by her allergies