- Monroe Mills, 5, from Nambucca Heads in northern NSW is deathly allergic to sunshine and fluro lights
- She breaks out in welts, rashes, has stomach pain, nausea and extreme fatigue after minutes in the sun
- She has to be covered head to toe in a special suit if she wants to play outside during the day
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.
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.
WHAT DOES IT MEAN TO BE ALLERGIC TO UV RAYS AND HAVE SOLAR URTICARIA?
Monroe is believed to be one of two young girls world wide with both solar urticaria and a UV ray allergy — the deadly combination means she is so allergic to the sun she could go into anaphylactic shock within minutes
The five-year-old experiences severe fatigue and nausea as well as joint pain, stomach aches. head aches when she is having a reaction
She has to wear a special UV protection suit to go outside — they cost about $2200
Fluro lights also cause the young girl’s allergies to flare up — she needs to wear protective clothing and a hat in the supermarket or anywhere else with the common lighting
She is also subject to a reaction if it is too warm so her home is cooled to under 20 degrees Celsius
‘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.
‘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.
‘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.