Benjamin Edmundson-Brown, from Easington Colliery, Durham, England has become an unsolved riddle for medical science. He is among only eight people in the world to suffer from a genetic disorder that is rarest of its kind that it does not even have a name.
Due to this disorder, Benjamin is unable to walk, talk or eat and also has epilepsy. He was born 10 weeks premature and weighed just 3lbs at the time of the birth. He was a daring baby who fought to survive. But has since been admitted to hospital numerous times with life-threatening chest infections.
Benjamin’s epilepsy causes him to endure such violent seizures his body gets thrown against walls. He is so helpless that he can’t even cry or bring out his tears to lessen his pain. He is also partially blind, an ulcer has formed in one of his eyes.
Speaking of when Benjamin was younger, his stepfather 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.’
Soon the parents realized he was not developing as he should. Mr. Kelly further 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 lid sewn shut which has left him partially blind.’