A British man who is so sensitive to the sun his face ‘fried’ when he was taken outside as a baby has been presented with a hyper-realistic second skin to protect him from the elements.
Since he was diagnosed with rare xeroderma pigmentosum as a child, Alex, 25, hasn’t stepped outside on a sunny day – and even on grey days he wears a cumbersome mask and protective visor to block out UV rays.
On the BBC Two show The Big Life Fix, inventor Zoe Laughlin designed a hyper-realistic ‘second skin’ mask – modelled on Alex’s own likeness – to help give him more freedom.
His mother Anna, who recalled how Alex was diagnosed when he was just a few months old after he ‘totally fried’ in the sun, said she was ‘blown away’ by Zoe’s design, which she created to look exactly like his actual face in addition to providing him with vital sun protection.
Alex’s condition means his skin has limited ability to repair DNA damage – like that caused by the sun. His parents were advised to ‘live by night’ following his diagnosis, but his mum came up with his old hat and visor herself because she ‘refused to lock him away’.
Alex, 25, who has a rare condition that makes him hyper-sensitive to sunlight, was presented with a hyper-realistic prosthetic mask modelled on his own face on the BBC Two show The Big Life Fix
An emotional Alex (pictured on the show) said he only wanted to be like everyone else, but can’t because of his xeroderma pigmentosum
Prosthetic-makers used a special camera that takes thousands of pictures a second to capture a complete likeness of Alex, which was then uploaded to a computer and printed as a 3D model.
The model was then placed into a plaster cast to create a mold for the mask, which is made of silicone with a UV rating of zero – because only a rating of one or below is considered safe for Alex.
Two months later the mask arrived, and Alex and his family were astounded by how realistic it looked.
Virtually speechless upon seeing his new mask, Alex said simply: ‘I didn’t think it would be possible.’
As a baby he was diagnosed Xeroderma pigmentosum after his skin blistered after being out in the sun (pictured)
The 25-year-old, whose parents were told he should ‘live by night’ when he was diagnosed as a baby, is seen left in his old hat and visor created by his mother, Anna, and right in the new mask designed for him by inventor Zoe Laughlin on the show
WHAT IS XERODERMA PIGMENTOSUM?
Xeroderma pigmentosum (XP) is an inherited condition that causes extreme sensitivity to UV rays from the sun.
It has been described as a ‘one-in-a-million’ condition.
XP is brought on by a genetic mutation.
Sufferers require complete protection from the sun, including clothing, sun cream and dark sunglasses.
Eighty-to-90 per cent of sufferers also experience:
- Joint pain
- Cognitive problems
- Teeth abnormalities
Due to sufferers being at high risk of sunburn, skin cancer is extremely common among patients.
There is no cure for XP.
Management of the condition includes protection from UV light, frequent skin examinations and prompt removal of any cancerous tissue.
Source: National Center for Advancing Translational Sciences
When Alex was only a few months old a family day out ended in disaster when his skin started to blister in the sun.
His mother said on the show: ‘You can see on the photos his face is fried, totally fried, there was no skin there. His face was burnt, his hands were burnt, his legs were burnt.’
Anna and Alex’s father John rushed him to A&E, where they were told he had developed an infection that would clear up.
However, when it happened again soon after they sought a second opinion, and were told he had rare xeroderma pigmentosum.
The condition means he is 10,000 more sensitive to UV damage than the average person – and that he is much more susceptible to developing cancer at a very early age.
He has been left with learning difficulties and partial hearing loss, similar to around a third of all those diagnosed with the rare condition.
His parents were advised to keep him inside and only take him out at night, but practical considerations made this tough to maintain.
Anna said: ‘The doctors told us the only safe way is to live by night, sleep by day so for the first few years we just had curtains drawn, and I was sitting inside crying with him while the world was going on outside.
‘But I thought, well if he’s going to die at three then I’ll do absolutely everything and anything to show him a little bit of the world. I wasn’t prepared to lock him away.’
His mother Anna was advised to keep him inside during the day and only let him out at night to protect his skin (pictured Anna and Alex when he was a child)
Anna was clearly emotional when she saw the mask, and said she woudln’t have ‘dreamed’ it was possible (pictured with inventor Zoe Laughlin)
His likeness was taken from a special camera that takes thousands of pictures a second (pictured)
She designed and made the hat that Alex would go on to wear all his life herself, but he found it restricting, and it didn’t provide complete protection from the sun.
‘I wish I could be like everyone else but I can’t help not being that,’ Alex said.
Not only did Alex have to the wear hat, but his mother had to carry around a UV reader to test the UV levels in the sun’s rays, as well as the lighting in whatever room he was in.
When Zoe pitched the idea of a mask to the family they were sceptical, but willing to try anything to make Alex’s life easier.
The mask (pictured) was made by a firm that makes prosthetics for films and television
Anna said: ‘Oh my god. It might work. I haven’t actually seen Alex outside in the daylight without this [mask] since he was three months old. Its like, oh please god, 25 years of waiting.’
When Zoe presented the mask to Alex his parents were clearly very emotional.
Anna said: ‘I blown away, I’m glad you tried something that hasn’t been done before.
‘Even in my wildest dreams I wouldn’t have dreamed it up.’
The Big Fix airs Thursdays at 8pm on BBC Two