Mum speaks out about port wine stains after people mistook her son’s for a burn

Mum speaks out about port wine stains after people mistook her son’s for a burn

Jensen was born with Sturge-Weber syndrome, which is marked by a large port wine stain on the head or face (Picture: Caters News)

A mum is speaking out to raise awareness of port wine stains after her son’s was mistaken for a severe burn.

Jensen Norris, six, was born with a port wine stain that covers the majority of his body, appearing across half his face, his chest, arms, and legs.

He has Sturge-Weber syndrome, the rare neurological disorder marked by a port wine stain on the forehead, scalp, or around the eye due to excess capillaries near the surface of the skin.

His parents Nicola, 40, and Lee, 47, from Sutton Valence in Kent say strangers often mistakenly think the port wine stain is caused by a severe burn, and assume they have let harm come to their child.

The couple are now sharing Jensen’s story to raise awareness of his condition and put a stop to the incorrect assumptions.

Nicola, a medical PA, said: ‘I get upset now that he’s older. Parents pull their children away from him and some people ask how he got so burnt.

Jensen’s condition also causes seizures Picture: CATERS NEWS AGENCY)

‘People stare at him and ask if the stain is contagious. It really upsets Lee and I, sometimes it can be utterly heartbreaking.

‘Since Jensen was born we’ve become used to it all. We don’t think about it. To us, he’s completely normal and he’s our special little boy.

‘He’s got the most amazing smile and such a lovely, caring nature.’

Lee, a civil servant, said: ‘When Jensen was young we were in a shopping centre and an old man came up and us him if we’d burnt him.

‘We said ‘no its a port wine stain’. It was quite shocking.

‘If we’re out in the park or something he’ll see other children. He really loves other kids and is quite inquisitive and wants to say hello and play with them.

‘But they’ll just look back and stare at him.

Strangers have pulled their children away from Jensen out of fear (Picture: CATERS NEWS AGENCY)

‘Sometimes the other parents even go up and pull them away from coming towards Jensen. It can be very upsetting.

‘Nicola is great about it though and goes up to the kids and explains why Jensen has the stain and introduces them to him.

‘We just want to educate people about it, he’s a normal little boy and has such a love of the world, we just want people to know he’s like everyone else.’

Jensen was diagnosed with Sturge-Weber syndrome soon after his birth in 2013.

Nicola and Lee spent fourteen years trying for children and were in the early stages of IVF when Nicola became pregnant.

The neurological condition doesn’t only cause the appearance of a large port wine stain, but also means Jensen suffers severe epileptic fits and glaucoma. He is unable to speak or move without help from a disability walker and can have up to 40 seizures a day.

His parents want people to know their son is a happy and friendly boy (Picture: CATERS NEWS AGENCY)

‘When he’s had a seizure his stains turn dark purple,’ Lee said. ‘He can’t really speak at all really. He can tap things and we know that that’s a signal that he wants them. He relies on us for pretty much everything.

‘It’s been very difficult for both Nicola and I. You don’t realise any different though until you see friends of yours and their children with Jensen.

‘Jensen gives us cuddles in his own way but when you see other kids run up to their parents and giving them hugs it can be tough.’

The parents hope that by talking more openly about Sturge-Weber syndrome, they’ll protect their son and other children like him from cruel treatment, and help people to understand that the condition is nothing to be afraid of.

They’re also raising money through a GoFundMe to pay for equipment and the cost of Jensen’s care.

More: Health

Nicola said: ‘We didn’t know anything was wrong until Jensen was born. At first the doctors thought he had been bruised but then he was diagnosed with Sturge-Weber syndrome.

‘To us, he’s a happy, smiley boy just like any other six-year-old his age. When he smiles at you you can’t help fall in love with him.

‘He’s a cheeky chappy. He’s a flirt too. If there’s a young trainee nurse who comes to see him he’ll know and gives them a great big smile.

‘We just want to tell people that Sturge-Weber isn’t anything to be concerned or scared of. We just want people to come up and say hello to Jensen. He’s just like any other kid.’

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