A toddler with a one-in-a-million genetic disorder must live in darkness because he is allergic to the sun.
One-year-old Freddie Mason-Perkins was born with trichothiodystrophy (TTD), which means his skin is extremely sensitive to ultra-violet rays.
The youngster is at risk of developing severe sunburn from just a few minutes of sunlight – causing his mum Carlie Perkins, 34, to live life with the curtains constantly shut.
‘When damage is done by the sun his body doesn’t repair,’ the mum-of-four said.
‘He got quite burned last year, just from being in the car when it was sat on the motorway in traffic for about half an hour.
‘His legs and arms flared up. He has got really burned like that twice before.
‘Now we keep him out of direct sunlight. UV comes in through the windows, so we have the curtains shut.
‘We will get special UV film put on the windows at home.’
When Ms Perkins goes out with Freddie, she has to keep him under a cover in his pushchair.
But even then, the toddler needs to wear sunglasses as the light can affect his eyes.
Freddie has cataracts in both eyes and nystagmus, which causes his eyes to shake.
‘As he gets older, things will get a bit more difficult when he becomes aware of why he can’t go outside,’ said Ms Perkins, who lives in Northampton.
‘The condition is a degenerative condition and lots of children don’t make it to adulthood.
‘I have spoken to other people around the world with children with same condition and one child has lived to 30 with it because they avoided sunlight.
‘One of the main things that can kill children with trichothiodystrophy is respiratory infections.
‘Freddie likes being around people – he is very sociable.’
Freddie was born prematurely from emergency caesarean at just 28 weeks old.
He weighed 2lb 5oz and was transferred to Great Ormond Street Hospital where he has spent most of his short life.
There, tests revealed Freddie that had ‘tiger tail banding’ – where the hair looks stripy under a microscope – a common signal for TTD.
The genetic disorder is so rare there are only thought to have been 100 cases worldwide.
Freddie was finally allowed home at the end of last month having spent Christmas, Easter and his first birthday at Great Ormond Street.
But due to his complex health issues, doctors have deemed it unlikely that he will make adulthood.
‘Freddie had a gastrostomy [a feeding tube put into his stomach] and I feed him his milk through this,’ his mother said.
‘When he goes to sleep I connect him to his oxygen and his monitor to check he is doing OK.
‘He has to have creams because of his skin condition and I do his eye drops and his teeth.
‘Medicine needs to go through his tube twice a day including antibiotics three times a week.
‘My friends see me doing all the medical stuff for Freddie and they are shocked.
‘Freddie might not live a long time because he has a lot of serious problems. But for us, Freddie is just Freddie. I don’t think about what will happen down the line.’
Ms Perkins is urging fundraisers to sign up for Jeans for Genes day on September 21 and to pledge funds to 500,000 children born in the UK with rare genetic disorders.