A schoolgirl suffers from a one-in-a-million condition that causes her to be allergic to the sun.
Nine-year-old Caitlin McCabe, from East Taunton, Massachusetts, has the genetic disorder Xeroderma Pigmentosum (XP), which means her body is unable to repair DNA damage caused by UV light.
Caitlin’s mother Ann-Marie, a nurse practitioner, is forced to apply layers of SPF 50 sun cream, as well as a UV-blocking shield, gloves and protective clothing, to her daughter’s skin every day to ensure no inch of it is exposed.
Cruel strangers say Caitlin looks like a beekeeper or an astronaut, however, if the youngster went outside without her protective headgear, she would be severely burnt within 90 seconds, even if it is snowing.
As well as being at risk of extreme sunburn, XP has also started to affect Caitlin’s balance and reflexes, with doctors being unable to tell her family how these symptoms may progress.
XP patients are up to 10,000 times more likely to develop skin cancer and, without protection, half of children sufferers are diagnosed with the condition before they turn 10.
Caitlin McCabe suffers from a one-in-a-million condition that causes her to be allergic to the sun. The youngster has to wear protective headgear every time she steps outside
Caitlin’s mother Ann-Marie (pictured) says cruel strangers call her daughter an astronaut or beekeeper due to her headgear. Yet, without it, she would burn within 90 seconds
As a baby, Caitlin looked like ‘one massive scab’ after just five minutes in the sun
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
‘I hate that big yellow ball in the sky’
Speaking of her daughter’s condition, Ann-Marie said: ‘She needs protection from bounce off the pavement otherwise she could burn her chin and in the winter she could be burned by the reflection from the snow.
‘We replaced all the lights in the house with LED and we are hypervigilant when we go to theme parks because there is a lot of “black lighting”.
Once at school, Caitlin, whose teddy bear also wears ‘protective’ headgear, is forced to reapply SPF 50 sun cream at least every three hours.
Ann-Marie added: ‘She puts on her gloves up under her jacket and there are no areas of the skin exposed. Then we plop her shield on her head.’
Speaking of how people react to Caitlin’s headgear, Ann-Marie said: ‘We often get people say, “Oh, look at that little beekeeper” or, “Oh look at the little astronaut”, which really annoys us.
‘It makes her feel terrible because it reminds her she is not like every other kid, but at the same time she is not shy about piping up and saying, “This is why I’ve got it”.
‘The condition has definitely prevented her from doing things.
‘She has not been able to go to children’s pool parties and it has been hard for us to have play dates in other places.
Ann Marie added: ‘At the beginning of a summer she will say, “I hate that big yellow ball in the sky”, but she has never known anything but a life with XP.
‘At nighttime she goes out without her shield and she loves it.’
Speaking of her disorder, Caitlin added: ‘I get really really bad sunburnt and I have a shield, a coat and gloves to protect me. My whole body is covered.
‘I’m kind of hot in it but it is my shield. It has a fan on it so I can keep cool.
‘At nighttime I can play outside without my gear on. I like going outside without it on because I get to enjoy things that other people do, like playing on my swing set and driving my truck.’
Caitlin has to ensure no inch of her skin is exposed, even in winter, or she will severely burn
This involves her wearing UV-blocking gloves and clothing, as well as SPF 50 sun cream daily
Although Caitlin gets upset by cruel comments, she is not too shy to explain her condition
‘The future holds whatever she wants it to’
Caitlin’s mother and Ann-Marie’s husband Robert McCabe, 55, a special needs teacher, first noticed something was wrong when Caitlin was just one-month-old.
Ann-Marie took Caitlin out of her stroller into the sun for five minutes while giving her a bottle.
She said: ‘I didn’t think anything of it, but at 2.30am I woke up to her screaming and thought she needed to be fed, but she was one massive scab.
‘She couldn’t open her eyes so we took her to the ER and they were looking at her like, “Oh my God”.
Doctors were initially unable to diagnose Caitlin’s condition, prompting Ann-Marie to keep a journal of all of her daughter’s symptoms to help medics connect the dots.
Biopsies confirmed her XP diagnosis in September 2009, when Caitlin was just one-year-old.
As well as severe sunburn, sufferers can also experience neurological problems, with Caitlin’s balance and reflexes recently being affected.
Ann-Marie said: ‘It has been difficult for us because we do not know how quickly her neurological issues will progress. In 10 years she could be no different.
‘It really sets us into a frenzy not knowing, but we take every day as it comes.
‘We have told Caitlin the future holds whatever she wants it to, so long as she knows how to protect herself.’
Caitlin (pictured with who is believed to be Ann-Marie’s husband Robert McCabe) has to be ‘hypervigilant’ when she attends theme parks due to the ‘black lighting’ causing burns
Caitlin prefers winter, saying ‘I hate that big yellow ball in the sky’ at the start of every summer
After Caitlin was exposed to the sun as a baby, staff in ER were amazed at her skin’s reaction
To help her accept her condition, Caitlin’s teddy bear also wears ‘protective’ headgear