Robert Smith, the 7ft 8” man dubbed by his mum as a ‘gentle giant” has died at hospital after a cardiac arrest.
His mother Rita, who cared for him round the clock, was inconsolable as she told how the son who brought light into her world died on Tuesday at the Queen Elizabeth Hospital at King’s Lynn.
Robert had proteus syndrome - bone overgrowth and gigantism - and for four years was virtually housebound.
Robert’s story went national last year and within weeks money poured in from across the country, totalling more than £10,000, to buy him a special motorised wheelchair.
Devoted mum Rita, 67, Robert’s main carer, said: “I can’t believe he has gone. He suffered a cardiac arrest, he couldn’t breathe.”
He had been in hospital for seven weeks after suffering diarrhoea. He then developed a condition known as clostridium difficile.
Robert, who weighed 19 stone and underwent 74 operations, suffered from proteus syndrome – the condition suffered by John Merrick, who was also known as The Elephant Man.
He also had gigantism, which meant he kept growing. At 16 he was 6ft tall and was still mobile but by 20 he could not longer walk and was incontinent. He suffered hydrocephalus and epilepsy.
Mrs Smith said: “He was a joker. He went through so much yet was so happy and funny. He was very much loved by everyone who came into contact with him. He never had a bad word to say to anybody.”
The campaign to buy him a motorised wheelchair began after hearing Robert had only been out four times in three years as he was too big and heavy for his mum to push him out.
People then rallied round to organise a trip for him to see his favourite WWE wrestlers in their Raw World Tour at Nottingham Arena in April last year where he met John Cena.
At the time Rita said it has restored her faith in people.
Robert had size 16 feet and a 40-inch inside leg. He also had sight and hearing problems. He also had a titanium plate in his head, to make room for the three shunts that drain fluid from his brain.
He was born a month prematurely in the Queen Elizabeth Hospital at King’s Lynn, and it was immediately clear he was unwell.
Mrs Smith, from Seabank Road, Walsoken, near Wisbech, said: “He was born by Caesarean section, and doctors said he would only live for a month.”
Having been diagnosed with hydrocephalus, Robert was in Addenbrooke’s Hospital in Cambridge when he started fitting, and by the age of two he had eight shunts draining fluid from his brain.
He was a pupil at Clarkson and Peckover schools in Wisbech before he moved on to Meadowgate special school at the age of 11.
Aged 10, he had a titanium plate inserted into his head, and when he was 16 it was discovered he had proteus syndrome.
Last year Robert said he was growing depressed as he was confined to his home, and was looking forward to his first outing in the motorised wheelchair with his sister Marie Louise.
He was looking forward to a visit to Asda in Wisbech to buy DVDs and CDs and chocolate caramel sweets.
Proteous syndrome results in bone overgrowth. Robert had 21 more bones in his hand than anyone else and was in a lot of pain. His knees and elbows were very large.
The front room at Mrs Smith’s home was turned into Robert’s bedroom, and because he needed constant attention, she slept in the same room, in a recliner chair.
The only respite was when a carer sat with Robert for three hours, once a week.
Mrs Smith suffers with health problems, including osteoporosis, arthritis, high cholesterol and high blood pressure.
A spokesman for the WWE said they are sending Mrs Smith a 50th anniversary wrestling book in memory of Robert.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here