Boy, 11, with a condition that is so rare it doesn’t even have a name

The boy who cannot walk, talk, eat or CRY: 11-year-old is one of just eight sufferers worldwide to suffer from a condition so rare it doesn’t have a name

• Benjamin Edmundson-Brown has epilepsy and cannot eat, walk or talk
• He endures violent seizures that cause his body to be thrown against walls
• Benjamin also cannot produce tears, which has left him blind in one eye  

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.   

• 
  Baby girl is born looking like a ‘ready-to-eat counter…

  
  Can YOU recognise the four celebrities behind the dots?…

  
  Student had to have her thumb amputated after developing a…

  
  Man, 68, who drinks 15 PINTS a day is forced to have a…

Share this article

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

Source: Read Full Article