Rare disease strikes a family, that still looks strong and jolly.
The two boys have sharp fang-like teeth, try to avoid sunlight and are called Cullen.
But this isn’t a Twilight film. It is the everyday reality for Simon Cullen, 13, and his brother George, 11.
The boys, from Sudbury-UK, Suffolk, suffer from a rare genetic condition known as Hypohidrotic Ectodermal Dysplasia (HED).
It means the boys cannot sweat, and must avoid too much light to stop them overheating.
They will never grow a full set of teeth, and the ones they have are sharp fangs.
HED is incredibly rare and only 7,000 people in the world have the condition.
Their mother Mandy Cullen, 45, said: ‘People stare because they’re so pale. One woman asked me if they had leukaemia.’
She added: ‘After the Twilight film came out, people thought it was amusing that we’re called Cullen.
‘We have two sons who have pointed teeth and can’t go out in the day, so it is a bit like being a vampire.’
Mandy and father John, 45, a fleet manager, first noticed something was wrong when Simon was just a few hours old.
‘It was a normal pregnancy and labour, ‘ said Mandy, a cashier.
Robert Pattinson plays Edward Cullen in the Twilight films. Simon and George said their friends think the comparison with Twilight is ‘cool’
‘But when he was a few hours old, Simon’s body temperature dropped.
‘A nurse placed him under a heat lamp to keep him warm. But after a few minutes blisters started forming on his arms and near his eyes.
‘It was like sunburn.’
Then when he was four months old, Simon caught a cold, which is potentially deadly for HED sufferers.
‘His temperature was rising,’ Mandy explained.
‘Because he couldn’t sweat we had to keep him cool somehow. We started with cold baths, but it wasn’t working, so we had to get him to hospital.’
Doctors at the West Sussex Hospital suspected it was HED, and when he was six months old and had not grown any teeth, the diagnosis was confirmed.
When Mandy fell pregnant with George 18 months later, the couple were warned he may have HED too.
‘Simon was doing so well with his condition so we didn’t really worry about it,’ she said.
‘When George was diagnosed we already knew how to deal with his HED.’
The boys cannot take part in sport because of the dangers of overheating and spend their days playing video games indoors.
They have to be careful in strong daylight, covering their delicate, pale skin in high factor sun cream and wearing sun hats and sunglasses.
Best wishes for the boys and lovely family.
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I found this interesting. I have the same condition and it is very rare. I’m happy to see this on Buzzfeed 🙂
We are kind of like vampires.. though this article makes it sound like we can’t touch sunlight. Though that would add to the awesomeness of the myth its a little exaggerated.
Best of to the lovely family!
– Matt
Glad you like the post. excuse medical details. Enjoy your life as much as you can my friend.
hi i just want to said that simon cullen is very very very hamsome (: