Mother's agony as 7ft son who was trapped in his home by a rare illness which meant he never stopped growing dies at 24 of massive heart attack

Robert Smith suffered from Proteus syndrome, said to have affected the Elephant Man, which causes the bones and skin to grow in an abnormal way

The 24-year-old died at his home in Cambridgeshire, despite his mother Rita's frantic attempts to save him he succumbed to a massive heart attack



He weighed 19 stone, had size 16 feet and a 40-inch inside leg, as well as suffering sight and hearing problems

In his lifetime he underwent a staggering 74 operations

Also suffered hydrocephalus - build-up of fluid on the brain - and epilepsy

His mother Rita, 66, his main carer, said: 'I can't believe he has gone... I'm devastated. I don't know what I'll do without him'



A 7ft young man struck with a rare illness which meant he never stopped growing has died of a massive heart attack despite his mother's desperate attempts to save his life.

Robert Smith was a prisoner in his home in the months before his death, bound the same condition thought to have afflicted Joseph Merrick, famously dubbed the Elephant Man in the late 19th century.

The 24-year-old was diagnosed with proteus syndrome, a rare illness which causes the abnormal growth of a person's bones, skin and head.



Robert passed away at his home in Walsoken, near Wisbech in Cambridgeshire despite his mother Rita's frantic attempts to save her only son.

Robert Smith, 24, has died at his home in Cambridgeshire, having suffered a massive heart attack despite his mother Rita's desperate attempts to save his life

Robert defied the medical odds stacked against him. His mother was warned he would not live beyond a month when he was born four weeks early.



Mrs Smith, 66, said: ' I can’t believe he has gone. Robert suffered a cardiac arrest and he just couldn’t breathe.

'I was on my own with him at the time - and I’m absolutely devastated. I don’t know what I’ll do without him.'

Robert, grew to weigh 19 stone, had size 16 feet and a 40-inch inside leg.

Standing at more than 7ft, he was one of the tallest men in the UK.

He suffered sight and hearing problems, and underwent a staggering 74 operations in his life time.

The 24-year-old also suffered gigantism, which meant he never stopped growing and also suffered hydrocephalus - a build-up of fluid on the brain - and epilepsy.

Three years ago he suffered meningitis, which left him unconscious for seven weeks and unable to walk.

In the three years since the illness struck, Robert had only ventured out of his home four times, at 19 stone he was too heavy for his mother to push in his wheelchair.



'Robert had not been able to walk since suffering from meningitis three years ago, when he was unconscious for seven weeks,' said Mrs Smith.

Robert, pictured at nine years old, suffered from proteus syndrome, which meant his bones never stopped growing. In the last months of his life he became a prisoner in his own home, having outgrown his wheelchair

Robert with one of his favourite toys when he was five. In his lifetime he underwent a staggering 74 operations. He was also diagnosed with gigantism, which means at 7ft he never stopped 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.



Last November friends and family launched a campaign to buy Robert a motorised wheelchair.

Within weeks more than £10,000 was donated by people from across the country, touched by the 24-year-old's plight.



Mrs Smith, her son’s main carer, said at the time: 'I am so grateful to the organisers of Robert Smith Fundraising.

'It has restored my faith in people.'

During the course of his operations, Robert had a titanium plate fitted in his head to make room for three shunts to drain the fluid accumulating on his brain.

He was born a month prematurely at the Queen Elizabeth Hospital in King's Lynn, Norfolk. It was immediately clear the newborn was seriously ill.



'Robert was born by Caesarean section and doctors said he would only live for a month,' said Mrs Smith.

He was being treated at Addenbrooke’s Hospital, Cambridge, for hydrocephalus when he started fitting.

Robert's mother Rita, 66, his main carer, said: 'I can¿t believe he has gone. I was on my own with him at the time - and I¿m absolutely devastated. I don¿t know what I¿ll do without him'

By the age of two the toddler had eight shunts draining fluid from his brain.

He had a titanium plate inserted into his head and was diagnosed with proteus syndrome at 16 years old.

At the time of his death Robert had been looking forward to his first trip out in his new motorised wheelchair, with his sister Marie Louise.

His mother, who suffers osteoporosis, arthritis, high cholesterol and a high blood pressure, said: 'Robert couldn’t wait to go to our local Asda store in Wisbech to buy DVDs and CDs and chocolate caramel sweets.

'It’s been tough but I wouldn’t change Robert for the world as he was such a gentle giant and very loving.'

The dedicated mother-of-two turned her living room into a bedroom for her son, and slept in the same room catching what sleep she could in a recliner chair.

Her only brief respite came when a carer sat with her son for three hours each week.

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, had 21 more bones in his hand than he should - and, as a result, suffered a great deal of pain.

