7ft and STILL growing: Rare condition means Robert, 24, is a prisoner in his own home - because he's grown out of his wheelchair
- - Robert Smith suffers from Proteus syndrome, said to have affected the Elephant Man,
which causes the bones and skin to grow in an abnormal way - - Robert, who weighs 19 stone, has size 16 feet and a 40-inch inside leg, also has sight
and hearing problems - and has had 74 operations - - Also suffers from hydrocephalus (build-up of fluid on the brain) and epilepsy
- - His family is now desperately fundraising to buy him a new £8,000 wheelchair - because
he has grown out of his current one - - Mother Rita, 66, his main carer, said: 'Robert has only been out four times in three years
- I can't push him out because he is too big and heavy'
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A 24-year-old man has become a prisoner in his own home because he suffers from a rare condition that means his bones won't stop growing - and he has grown out of his wheelchair.
Robert Smith suffers from proteus syndrome, which causes his ones and skin to grow in an abnormal way.
The devastating condition is thought to have afflicted Joseph Merrick, famously dubbed the Elephant Man, in the late 19th century.
Trapped: Robert Smith, 24, suffers from proteus syndrome, which means his bones won't stop growing. He has become a prisoner in
his own home because he has outgrown his wheelchair
Robert, who weighs 19 stone, has size 16 feet and a 40-inch inside leg, also has sight and hearing problems. To date, he has undergone a staggering 74 operations.
He also suffers from gigantism, which means at 7 ft tall he is still growing, along with hydrocephalus (a build-up of fluid on the brain) and epilepsy.
Since suffering from meningitis three years ago, when he was unconscious for seven weeks, he has been unable to walk.
Family and friends from Walsoken, near Wisbech, Cambridgeshire, are now desperately fundraising to buy him a new £8,000 wheelchair - because he has grown out of his current one.
Robert's mother Rita, 66, his main carer, said: 'Robert has only been out four times in three years - I can't push him out because he is too big and heavy.
Robert when he was a 9-year-old schoolboy. He now weighs 19 stone, has size 16 feet and a 40-inch inside leg
Robert with one of his favourite toys when he was five. To date, he has undergone a staggering 74 operations. He also suffers from gigantism, which means at 7ft he is still growing, along with hydrocephalus (a build-up of fluid on the brain) and epilepsy
WHAT IS PROTEUS SYNDROME?
Proteus syndrome, thought to affect only a few hundred people worldwide, results in bone overgrowth.
The word 'Proteus' comes from the name of the ancient Greek god of change.
This overgrowth is usually asymmetrical, so corresponding body parts are not affected in the same way.
Robert, for example, has 21 more bones in his hand than he should - and, as a result, suffers a great deal of pain.
More men are affected than women and the cause is unknown.
The syndrome became more widely known when it was determined that Joseph Merrick (the patient depicted in the play and film 'The Elephant Man') had severe
Proteus syndrome rather than Neurofibromatosis, as had been suggested previously.
Proteus syndrome rather than Neurofibromatosis, as had been suggested previously.
Mrs Smith, who manages to look after her son despite battling osteoporosis, arthritis, high cholesterol and high blood pressure herself, added: 'A motorised wheelchair would totally transform our lives.'
'The longer Robert is forced to spend in the house, the more depressed he is becoming.'
Robert added: 'I just want to go out with my sister Marie Louise and visit Asda in Wisbech to buy some DVDs, CDs and chocolate caramel sweets.'
Robert was born a month prematurely at Queen Elizabeth Hospital, King's Lynn, Norfolk, and it was immediately clear he was unwell.
'He was born by Caesarean section and doctors said he would only live for a month,' said Mrs Smith.
Robert was diagnosed with hydrocephalus and taken to Addenbrooke's Hospital, Cambridge.
He started fitting as a baby and had eight shunts draining fluid from his brain by the time he was two.
At the age of 10 he had a titanium plate inserted into his head, before being diagnosed with Proteus syndrome at 16.
Robert's mother Rita, 66, his main carer, said: 'Robert has only been out four times in three years - I can't push him out because he is too big and heavy.' Locals are now now desperately fundraising to buy him a new £8,000 wheelchair
Proteus syndrome, thought to affect 120 people worldwide, results in bone overgrowth. This overgrowth is usually asymmetrical, so corresponding body parts are not affected in the same way.
Robert, for example, has 21 more bones in his hand than he should - and, as a result, suffers a great deal of pain.
'His knees and elbows are also very large and his skin is so thin that only a tap will make it rip,' his mother explained.
Proteous syndrome results in bone overgrowth. Robert, for example, has 21 more bones in his hand than he should - and, as a result,
suffers a great deal of pain
Such is the level of care he needs that his mother sleeps next to him in a recliner chair.
'The only respite I have is when a carer sits with Robert for three hours, once a week,' she said.
'But I wouldn't change Robert for the world - he is a gentle giant and very loving.'
'It will be wonderful when we get the wheelchair.'
Donations can be made directly to the charity’s account at the Natwest Bank: Account number 89560027 sort code: 55-81-28 (account name Robert Smith Fundraising).
For information on other possible ways to donate, please email anna.hodgekiss@mailonline.co.uk
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