A three-year-old boy is “forced” to stay indoors all summer due to an ultra-rare sun allergy.
Cole Pugsley suffers from polymorphic light eruption (PLE), which causes painful rashes and blisters to appear on his skin after even a few minutes of sun exposure.
But the disease, which is thought to affect between 10 and 15 per cent of the UK population, has no cure.
This means that the child cannot go on holiday abroad or even sit in the sunlight coming through the window without suffering a painful reaction.
During the summer, his mother, Hanna-May Pugsley, 32, and her partner, Ryan, 30, have to get Cole and his brother, Dray, eight, out at 8am and make sure they are home by 11am.
Three-year-old Cole Pugsley can’t go on holiday abroad or even sit in the sunlight outside his window without suffering a painful reaction.
During the summer, his mother, Hanna-May Pugsley, 32, and her partner, Ryan, 30, have to get him and his brother, Dray, eight, out at 8am and make sure they are home by 11am.
Cole Pugsley suffers from polymorphic light eruption (PLE), which causes his skin to break out in painful rashes and blisters even after just a few minutes of sun exposure. It typically affects the areas of skin most exposed to sunlight, such as the head, neck, chest and arms, according to the NHS.
“Every time she goes outside, even for five minutes, she gets irritated wherever her body is exposed,” said Pugsley, a night porter from Arbertillery, Wales.
“He is in a lot of pain and discomfort and develops a very ugly rash that can leave a scar.
‘I’m terrified of the heat. My mother calls me to ask if it’s going to be hot and instead of getting excited, I say, “Oh, God, no.” It’s a nightmare.
‘Even when he’s in the car or sitting on the couch and the sun is coming through the window, I have to keep him completely covered.
‘He has to wear long trousers and sleeves, so he suffers a lot in the heat.
-There is no cure. He takes antihistamines every day.
‘I have to organize days out when it rains.
‘He won’t be able to enjoy anything. He won’t be able to experience the summer.
“It’s changed the way we think about everything. We wanted to go to Spain in September, but that will have to change.
‘Holidays abroad are completely out of the question until he is older and can make decisions for himself.
‘I won’t put him in an awkward position.
‘Instead of going on vacation to a sunny place, we will have to go somewhere cold in the coldest season.
“It’s a good thing we live in Wales. If we lived somewhere warm, I’d be in a lot of pain.”
The allergy is triggered by exposure to sunlight or artificial ultraviolet (UV) light. This is thought to alter a substance in the skin to which the immune system reacts, causing the skin to become inflamed.
It causes an itchy, burning rash that can appear within a few hours of exposure and last up to two weeks.
Some people develop blisters that turn into larger, drier patches that look like eczema, while others develop raised red spots.
It usually affects areas of the skin most exposed to sunlight, such as the head, neck, chest and arms, according to the NHS.
Cole was diagnosed with PMLE in June 2024, when he developed hives after just ten minutes of playing in the garden.
Mrs Pugsley said: ‘Every time he went into the garden or park, within ten minutes he would break out in a nasty red rash and sometimes blisters.
‘He would get very heated and threatening.
‘I had a suspicion it had something to do with the sun.
‘His father didn’t believe him because he didn’t know he existed, (but) being his mother, I knew.
“I took him to the doctor and they told me it was primary progressive myeloid leukemia.”
The allergy is triggered by exposure to sunlight or artificial ultraviolet (UV) light. This is thought to alter a substance in the skin, to which the immune system reacts, causing the skin to become inflamed.
The family has decided to swap their trip to the sunny Spanish coast for a getaway to Scotland.
The family organizes trips to the aquarium and avoids outdoor activities. They even organize outings when it rains.
Cole’s grandfather has built a summer house in the family garden so he can play outside with his brother.
Now, the family has decided to swap their trip to the sunny Spanish coast for a getaway to Scotland.
Cole’s grandfather has built a summer house in the family garden so he can play outside with his brother.
Ms Pugsley added: ‘The difficulty is applying sunscreen and keeping a hat on for a three-year-old.
‘We have to bribe him with treats to get him to take his antihistamines.
‘We have to take him to indoor adventure parks, but I feel bad for Dray when the weather is nice.
‘We have to do indoor activities, like going to the aquarium.
‘They have new electric scooters and we can’t take them out for a ride.
“He wants to go outside and play. My dad built him a summer house and they had a water fight, but he had to stay there.
‘We used to take Dray to the beach every other week, but Cole hasn’t really been going.’
