December 11 2013 Latest news:
Friday, November 1, 2013
For three years, gentle giant Robert Smith has been virtually housebound.
But now the 24-year-old, who is more than 8ft tall, is dreaming of the day that he can get out – thanks to the efforts of fundraisers who are working hard to raise the £8,000 needed to buy him a bespoke wheelchair.
Robert, who weighs 19 stone and has undergone 74 operations, suffers from proteous syndrome – the condition suffered by John Merrick, who was also known as The Elephant Man. He also has gigantism, which means he is still growing, along with hydrocephalus and epilepsy.
Devoted mum Rita Smith, 66, Robert’s main carer, said: “A motorised wheelchair would transform our lives. Robert has only been out four times in three years – I can’t push him out because he is too big and heavy.
“I am so grateful to the organisers of Robert Smith Fundraising. It has restored my faith in people.”
Robert, who has size 16 feet and a 40-inch inside leg, also has sight and hearing problems – and has 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 plateinserted into his head, and when he was 16 it was discovered he had proteus syndrome.
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. “I want to go out with my sister Marie Louise, and visit Asda in Wisbech to buy some DVDs and CDs, and some chocolate caramel sweets,” he said.
Mrs Smith said: “I would not change Robert for the world, he is a gentle giant and very loving. But I cannot take him out, because he is too big and too heavy to push. He has grown out of the manual wheelchair that was made for him by someone in Sweden two years ago.”
Proteous syndrome results in bone overgrowth. Mrs Smith said: “He has 21 more bones in his hand than anyone else and is in a lot of pain. His knees and elbows are very large.
“He also has problems with his skin: you can see all his veins and only a tap on his skin will lead it to rip.”
The front room at Mrs Smith’s home has been turned into Robert’s bedroom, and because he needs constant attention, she sleeps in the same room, in a recliner chair.
“I have not slept in a bed for three years,” she said. “The only respite I have is when a carer sits with Robert for three hours, once a week.”
Mrs Smith also suffers with health problems, including osteoporosis, arthritis, high cholesterol and high blood pressure.
Margaret Green and Barbara Elsey have been organising fundraising events, and Adele Wright has organised a fund raising evening of claivoyance for November 13.
Robert’s carers are planning a sky dive, and the post office at Walsoken and the flower kiosk at the Wisbech Horsefair are collecting cash for the wheelchair.
Mrs Smith said: “It will be wonderful when we get the wheelchair. Robert has not been able to walk since suffering from meningitis three years ago, when he was unconscious for seven weeks.”
Tickets for the evening of clairvoyance at the White Lion Hotel in Wisbech on November 13 cost £7, available from Mrs Wright on 01945 587653.