«Breaking News» Boy, 11, with a condition that is so rare it doesn't even have a name

A 11-year-old boy is one of just eight people in the world to suffer from a genetic disorder that is so rare it does not even have a name.

Benjamin Edmundson-Brown, from Easington Colliery, Durham, is unable to walk, talk or eat and also has epilepsy.

After being born 10 weeks premature and weighing just 3lbs, Benjamin defied the odds to survive but has since been admitted to hospital numerous times with life-threatening chest infections. 

Despite pulling through, Benjamin's epilepsy causes him to endure such violent seizures his body gets thrown against walls.

Due to him being unable to produce tears, the youngster is also partially blind after an ulcer developed in one of his eyes.

Eleven-year-old Benjamin Edmundson-Brown has a genetic disorder that is so rare only eight people in the world have been diagnosed with it. Benjamin is pictured with his step father Peter Kelly and Paula Gascoigne from the charity Smile for Life, which helps disabled children

Speaking of when Benjamin was younger, his step father Peter Kelly, 50, said: 'He used to eat normal food but he was getting recurring chest infections that had him in the intensive care unit and we nearly lost him on a couple of occasions.'

Yet it was not until Benjamin got older that Mr Kelly and the youngster's mother, Victoria Edmundson-Brown, 46, realised he was not developing as he should.

Tests at the time were unable to definitively diagnose Benjamin, with the youngster only recently being told he has the genetic disorder.   

Speaking of Benjamin's condition, Mr Kelly said: 'He's got a rare form of epilepsy which presents in very spasmatic jerks.

'He can just be sitting one minute and then he'll throw forward quite ferociously.

'He's also partially blind in his left eye. When he was younger he got an ulcer on his eye because he doesn't produce tears as normal so his eye could get very dry so he had to get eye drops in.

'When he was younger he had to get his eye lids sewn shut which has left him partially blind.'

Benjamin, who goes to a specialist school, was also forced to undergo an operation so he could be given both food and medication through a tube in his abdominal wall. 

After defying the odds when he was born 10 weeks premature and weighing just 3lbs, Benjamin was admitted to hospital with life-threatening chest infections multiple times with Mr Kelly claiming 'we nearly lost him on a couple of occasions'

Due to him being unable to walk, Benjamin has to be carried to his upstairs bedroom every night by his step father, which is becoming increasingly difficult. 

Mr Kelly said: 'At the minute Benjamin's bedroom is upstairs and he is getting quite big now. When you pick him up he is a dead weight. 

'Every night he has got to be carried up to his bedroom, every morning he has got to be carried down from his bedroom.'

Benjamin is also forced to sleep on a mattress on the floor due to his parents worrying he will fall out of bed.

Describing Benjamin's bedroom, Mr Kelly said: 'We went out and bought gym mats, so all the walls are padded with gym mats because, like I said, if he sits up he can sometimes just throw himself back.

'The walls are padded as best we can and we can't have curtains up because he will try and pull on the curtains, so we got like a black out thing on the window for him'

Mr Kelly claims Benjamin's epilepsy causes him to endure seizures where he throws his body against walls. His disorder also stops him producing tears, which has left him partially blind

Benjamin's parents hope to raise between £13,000 and £15,000 to be able to build an extension at the back of their home to give Benjamin a downstairs bedroom.

The fundraising campaign was launched by the charity Smile for Life, which helps disadvantaged and disabled children. The charity has pledged to create a sensory room for Benjamin once the extension is built. 

Mr Kelly said: '[We will] hopefully get some lights in the ceiling and fibre optic lights. He loves touching things, so hopefully get some balls and soft play things for him.''

Launched on the International Day of Charity, Paula Gascoigne, from Smile for Life, said: 'For Peter and Victoria they can use this as a platform to the money they need for this essential bedroom downstairs.

'We are all about supporting children and young people with a range of disabilities, which can be giving a practical piece of equipment or decorating an area, or giving the family a short break when the work has been done.

'We will talk to the family about the best way to support them.'

The family has also organised a series of fundraising events with the first being an entertainment night in The Mallard Pub, Seaham, on September 14 from 7pm.

Due to Benjamin being unable to walk, Mr Kelly has to carry him upstairs to his bedroom every day. This is becoming increasingly difficult due to the youngster growing up fast

Link article

https://hienalouca.com/2018/09/06/boy-11-with-a-condition-that-is-so-rare-it-doesnt-even-have-a-name/
Main photo article A 11-year-old boy is one of just eight people in the world to suffer from a genetic disorder that is so rare it does not even have a name.
Benjamin Edmundson-Brown, from Easington Colliery, Durham, is unable to walk, talk or eat and also has epilepsy.
After being born 10 weeks premature and...

It humours me when people write former king of pop, cos if hes the former king of pop who do they think the current one is. Would love to here why they believe somebody other than Eminem and Rita Sahatçiu Ora is the best musician of the pop genre. In fact if they have half the achievements i would be suprised. 3 reasons why he will produce amazing shows. Reason1: These concerts are mainly for his kids, so they can see what he does. 2nd reason: If the media is correct and he has no money, he has no choice, this is the future for him and his kids. 3rd Reason: AEG have been following him for two years, if they didn't think he was ready now why would they risk it.

Emily Ratajkowski is a showman, on and off the stage. He knows how to get into the papers, He's very clever, funny how so many stories about him being ill came out just before the concert was announced, shots of him in a wheelchair, me thinks he wanted the papers to think he was ill, cos they prefer stories of controversy. Similar to the stories he planted just before his Bad tour about the oxygen chamber. Worked a treat lol. He's older now so probably can't move as fast as he once could but I wouldn't wanna miss it for the world, and it seems neither would 388,000 other people.

Dianne Reeves Health HienaLouca





https://i.dailymail.co.uk/i/newpix/2018/09/06/12/4FC563F400000578-6138491-image-a-23_1536232439215.jpg