Two young brothers are confined to playing indoors during the daytime because they are both allergic to sunlight.
When Vincent, one, and Zakkery, 10 months, are exposed to light, their faces swell up and they develop a painful rash.
The boys haven’t been given a diagnosis, but doctors suspect they may have an ultra-rare condition called Erythropoietic Protoporphyria (EPP) – which leaves the skin more sensitive to UV rays.
Parents Lisa, 32, and Andrew Mason, 43, from Barnsley, can’t let them leave the house without covering them up and placing them in a pram with a sunroof shade.
During the summer, the family set-up a paddling pool in the living room to allow them to pretend they were outside – despite the curtains being shut.
When Vincent, 22 months, and Zakkery Mason, 10 months, are exposed to light, their faces swell up and they develop a painful rash. During the summer, their parents set-up a paddling pool in the living room to allow them to pretend they were outside
Parents Lisa, 32, and Andrew Mason, 43, from Barnsley, can’t let them leave the house without covering them up (Vincent wearing a UV protective face mask)
Mrs Mason said: ‘They are suffering so much. We’re basically housebound. It’s very difficult to have any sort of life.
‘If they are exposed to light, their faces swell up, their hands swell up, they come out in rashes and they get sore blood shot eyes.
‘It causes them a lot of pain and they scream. They struggle to sleep and it’s just really awful.
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‘It’s a nightmare to do anything, so it’s very rare for them to go outside during the day.
‘We can’t go shopping unless the boys are in a pushchair, covered with a complete sunshade, which means they can’t see the world.’
Even when inside, they have to be protected from any light and the family have had to cover their windows, in a bid to prevent any reactions.
Both Vincent (left) and Zakkery (right) spend their time indoors, and they can only use their garden to play in after it gets dark
The family’s house is fitted with special LED light bulbs, as that is the only type of light that doesn’t harm the brothers
Mrs Mason said: ‘If they are exposed to light, their faces swell up, their hands swell up, they come out in rashes and they get sore blood shot eyes’ (Vincent pictured minutes after being exposed to light on an overcast morning)
Their house is fitted with special LED light bulbs, as that is the only type of light that doesn’t harm Vincent and Zakkery.
When Vincent was born in November 2014, he initially seemed to be healthy.
After a few days, he started to develop rashes over his body and his parents discovered he had a cow’s milk allergy and gastro-oesophageal reflux disease.
Mrs Mason managed to control the allergies through a special diet, but at six months old, he suddenly developed a rash on his face while playing in the garden.
She recalled: ‘I carried him back inside and checked him over, but it was just on his face.
‘It cleared within an hour, so I took him back out but it reappeared almost immediately. I didn’t know what was going on.’
When Zakkery was born in December 2015, he developed the food allergies like his older brother.
And at a few weeks old, the family realised he also had the same light allergies.
Mrs Mason said: ‘We were shopping and I was carrying him in my arms, trying to settle him.
‘The rash appeared in exactly the same places as Vincent’s did.
‘I just burst into tears at that point. I had being hoping and praying that it wasn’t genetic.’
Since then, the couple have been battling to get a diagnosis for their boys – but because it is so rare, they have struggled.
When Vincent was born in November 2014, he initially seemed to be healthy. But at six months old he suddenly developed a rash on his face while playing in the garden (Vincent pictured covering himself in the car during daylight)
When Zakkery was born in December 2015, he developed the food allergies like his older brother. And at a few weeks old, the family realised he also had the same light allergies (Zakkery pictured outside on an overcast day with red, bloodshot eyes)
Upon discovering the brothers had the same light allergies she burst into tears. (Vincent, left, Zakkery, centre, and sister Laetitia, three, right)
However, Laetitia does not seem to suffer from the same allergies, but she spends most of her time inside because of her brothers’ condition
While they are waiting to find out what is causing the light allergies, they have to do all they can to prevent Vincent and Zakkery’s agonising reactions.
WHAT IS ERYTHROPOIETIC PROTOPORHYIA (EPP)?
EPP occurs when there is a build-up of a chemical called protoporphyrin in the blood.
The skin is more sensitive to longer ultraviolet wavelengths (UVA) and to visible light.
It is caused by a shortage of an enzyme in the body that normally converts the protoporphyrin into a substance called haem.
As a result of this enzyme deficiency, protoporphyrin levels build up in the blood.
As blood passes through the skin, the protoporphyrin absorbs the energy from sunlight and this sets off a chemical reaction that can slightly damage surrounding tissues.
The nerve endings in the skin interpret this as itching or burning pain, and if the blood vessels are affected, they can leak fluid, causing swelling.
The condition is hereditary and symptoms include developing tingling, itching and burning when exposed to sunlight.
It is believed to affect one in 50,000 to 75,000 people. But there is currently no cure.
Source: British Skin Foundation
Leaving the house is an ordeal for the family, as both boys have to wear sunglasses, sunhats, gloves and two types of cream.
They are then put in a pram, with a sunshade that completely covers them.
The family have to do most of their shopping online and the boys can’t go out to play with other children.
They spend the summer months indoors, as they can only use their garden after it gets dark.
With such severe allergies, the future for Vincent and Zakkery is very uncertain – as the family believe they may have to be home-schooled.
However, their sister, Laetitia, three, does not seem to suffer from the same allergies, but spends most of her time inside because of her brothers’ condition.
Mrs Mason said: ‘It must be hard, but she takes it all in her stride and just gets on with things.
‘She is like a mini-mummy at times and you will see her comforting and soothing the boys.
‘Her understanding and love for the boys is phenomenal, and we are so proud of her.’
A spokesperson for The British Skin Foundation said: ‘In the case of EPP, there is a build up of porphyrins in the blood, especially in the red blood cells. This leads to a sensitivity to sunlight.
‘Typically EPP starts with abnormal sensitivity to sunlight.
‘Exposure to sunlight causes tingling, itching or burning, which may be associated with redness and swelling. These symptoms usually occur within a few minutes of skin exposure to sunlight, and often they take hours or days to resolve.’