Extraordinary People

extraordinary people: the boy who can never grow old
21.00–22.00

Five’s acclaimed documentary strand continues with another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme follows 19-year-old Stuart Wickison, who is refusing to let the debilitating condition Duchenne muscular dystrophy (DMD) stop him from going to university.

DMD is a rare degenerative condition that affects boys, gradually robbing the sufferer of the ability to use all his muscles. Born healthy, boys with DMD will later begin to have problems standing up. As teenagers they will need wheelchairs and soon become effectively trapped inside their bodies. The incurable condition gets progressively worse until the sufferer’s heart and lungs stop functioning altogether, resulting in death. Young men with DMD do not live long into their 20s.

Incredibly, faced with this prognosis, 19-year-old Stuart Wickison has decided to go to university. Despite the fact that he is nearing the end of his life, Stuart’s determination to live as a normal teenager has never been stronger. He has decided to leave the comforts of Treloar College, a Hampshire college with a high level of specialist care for severely disabled young people, to study art. “I’m not here to suffer,” he says matter-of-factly. “I’m here to make an impact.”

Going to university will be a huge step for Stuart. At Treloar’s he has 24-hour medical support, can call upon physiotherapists at any time, and lives in an environment where people are accustomed to his needs. This support enables Stuart to live, so organising his care for university is a matter of life and death. The Treloar’s staff, with whom Stuart has become close during his three years at the college, are encouraging him to go and helping him prepare for this next step.

However, when Stuart leaves Treloar’s he will also be saying goodbye to four friends with DMD: Jonathan, Harry, Ben and Tyran. The five boys lost another friend, David, to DMD last year and have been campaigning for greater medical research funding to find a cure –something which scientists are coming closer to achieving. The boys head up to London to lobby Parliament, and meet families from all over the country who have been affected by DMD. The campaign is now in its fifth year and has made great advances in raising awareness and funds for research.

At the forefront of the research is Professor Dominic Wells, who has been involved in pioneering, cutting-edge research into gene transfer therapy. Unfortunately, developing a cure will be a long and complicated process –and Stuart knows that it is unlikely to happen in his lifetime. However, the campaign has given him a sense of shared purpose –and the knowledge that it could eventually help the younger generation of DMD sufferers.

Back at Treloar’s, the students are getting ready for the end of term. While his friends head out for a night on the town, Stuart must study: he has an A-level exam in a few days and a university open day to attend. However, staff are concerned as Stuart’s health is deteriorating: his ability to swallow is getting weaker and he is losing weight. Four days before he is due to begin university, Stuart has to have an operation to place a feeding tube in his stomach –but the doctors say that he can still start university as planned.

Stuart’s first day is a momentous one for him, as well as his mother, Mandy. “He’s been through a lot to get here,” she says proudly. Stuart is excited about taking the next step in his education and development. “It’s made me realise that there’s more to me than suffering,” he explains. “It’s enlightening to walk into a place and everyone’s looking at you and valuing you as an equal to everyone else –which I’ve never had before.”

extraordinary people: living with half a brain
21.00–22.00

Five’s acclaimed documentary strand continues with another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme follows the stories of two young sufferers of epilepsy as they undergo radical surgery to remove large sections of their brains.

At the age of just three, six-year-old Cameron Mott developed a devastating and progressive brain disorder called Rasmussen’s encephalitis. This rare disease attacks the right side of the sufferer’s brain, causing a rapid decline in mental faculties and –if left untreated –eventually leading to partial paralysis. Cameron’s condition has left her with extreme epilepsy. Her daily life is plagued by sudden and frequent fits forcing her to wear a protective helmet at all times. She is only free from the fits for a precious 30 minutes at the beginning of every day, before she collapses and falls victim once more to the relentless cycle of seizures.

This film follows the Mott family as they travel from their home in North Carolina to the Johns Hopkins Medical Institute in Baltimore for a radical treatment. Cameron is about to undergo a complex operation called a hemispherectomy, which is the last resort for doctors treating children with her condition.

During seven hours of surgery, led by Dr George Jallo, chunks of the right side of Cameron’s brain are painstakingly removed. Though the operation is incredibly delicate and difficult, time is of the essence, since the cavity left in Cameron’s head fills with cerebral-spinal fluid at a rate of a teaspoonful every five minutes. Once surgery is over, Cameron is immobilised –any movement could dislodge the remaining half of her brain. For 48 hours, Shelley and Casey Mott cannot hold or hug their little daughter.

Just eight days after her radical treatment, Cameron pedals down the hospital corridor on a tricycle, laughing as she cycles. Her parents believe it is nothing short of a miracle and even her neurosurgeon is amazed by the little girl’s rate of recovery. “I always think that these children… are going to be dependent on their parents for the rest of their lives,” admits Dr Jallo.

However, surviving the operation is only the first hurdle for Cameron –her real challenge is yet to come. The effects of the surgery are similar to the results of a major stroke, so there is a chance that the entire left side of the little girl’s body could be permanently paralysed.

Incredibly, it is also possible that Cameron will make an almost complete recovery. At her age, the brain has a remarkable capacity to reorganise itself – with one side of the brain effectively taking over the functions of the other. All Cameron’s parents can do for now is wait and hope, but they remain confident that their daughter’s determination will see her through.

Elsewhere, in London’s Great Ormond Street Hospital, 14-year-old epileptic Sean Goldthorpe has his brain connected to a machine. As Sean reads aloud, neurologist professor Helen Cross sends electric charges into the part of his brain that controls language. Sean stumbles and is unable to read further, becoming anxious and frustrated. This disquieting session is part of an invasive monitoring programme being used by Professor Cross to pinpoint the part of Sean’s brain causing his fits. It is an exhausting ordeal for Sean, but he is willing to go through with it if it will give him an opportunity to be seizure-free.

Professor Cross eventually discovers that Sean’s fits are emanating from his hippocampus – an area deep within the brain responsible for emotion and memory. As he grows older, the effects of Sean’s seizures are spreading to the language area at the back of his brain via a lesion. To stop his fits, Sean will need to have both of these areas of his brain removed, but doctors will only go ahead with the operation if they are certain that his memory and speech will not be damaged irreversibly. Sean’s parents now face an anxious wait as their son’s future lies in the doctors’ hands.

extraordinary people: living with half a brain

Five’s acclaimed documentary strand continues with more programmes exploring remarkable tales of human experience. Coming soon is the story of six-year-old Cameron Mott, who has undergone a radical operation to remove half her brain.

At the age of three, Cameron was diagnosed with a progressive brain disorder that attacked the right side of her brain and threatened to paralyse half her body. Doctors decided the only solution was to remove chunks of her brain in a seven-hour hemispherectomy operation.

This film follows Cameron and her family on their journey from their North Carolina home to the Johns Hopkins Medical Institute in Baltimore for this highly delicate surgery. It captures Cameron as she undergoes the procedure and battles the sudden and frequent epileptic fits that are a side effect of her condition. Incredibly, it is possible for her to make a full recovery – if her young brain can learn to reorganise itself.

The documentary also meets 14-year-old Sean Goldthorpe, who is prone to debilitating seizures. At Great Ormond Street Hospital, his brain is studied in an attempt to understand the cause of his fits. Doctors hope to establish which areas of Sean’s brain they need to remove in order to cure him – but it is a procedure that could have a devastating effect on his speech and memory.

extraordinary people: the tiniest boy in britain
monday, 21.00–22.00

Five’s acclaimed documentary strand continues with the story of two-year-old Alex Connerty, Britain’s only primordial dwarf. Alex was born with an extremely rare condition that has stunted his development and means that he will grow to be no taller than three feet. This film follows Alex and his family as they travel to the US to meet the world’s only expert in primordial dwarves, in the hope that he can tell them what their son’s future holds.

Alex Connerty from Liverpool suffers from a remarkable genetic disorder called primordial dwarfism, which results in smaller physical development from the womb onwards. This condition, barely understood by doctors, affects an estimated 100 people in the world, and is so rare that it can be difficult to diagnose. So little is known about the disorder that doctors cannot even predict how long Alex will live – whether it be two, five or ten years. It is known, however, that primordial dwarves almost never live beyond 30 years, and that they are at greater risk of internal organ problems.

This film meets Alex’s parents, Sue and John, as they talk frankly about living with a condition that has baffled medical experts. Sue explains that she knew something was wrong with Alex even during pregnancy. She had three miscarriages before conceiving him, so was especially alarmed when Alex did not move in the womb. “I bought a listening device so I could hear his heartbeat just to put my mind at rest,” she says.

Doctors assured Sue and John that Alex was simply a small baby; however, at 30 weeks, a scan revealed that Alex had stopped growing. Sue was rushed into hospital for an emergency Caesarean. “I was devastated – I thought I had lost another baby,” she says. Almost one third of primordial dwarves die at birth or soon after – but, against the odds, Alex survived. For the first three months of his life, he was kept in intensive care as he battled stomach and lung problems. Then a visiting geneticist examined Alex and came to a conclusion that his parents had never expected to hear. “She said, ‘your son is a primordial dwarf’,” John recalls. “I didn’t understand what she was on about. She tried to explain. [When] she told me he would never be bigger than three foot, I laughed in her face.”

After the news sank in, John and Sue had to come to terms with the terrible consequences of Alex’s condition. Aside from his curtailed life span, he would never be able to have children, and was at risk of slow development, spinal curvature and breathing problems. The couple were further staggered to learn that there was little information their doctor could give them. “He literally said, ‘I don’t know the answer’ to most of our questions,” Sue says. “We were flabbergasted.”

What is known is that Alex is in severe danger of suffering a ruptured blood vessel in his head – a common occurrence in primordial dwarves, whose brains often develop faster than their skulls can accommodate. This is why the Connerty family have decided to travel to Seattle to meet the only world expert in primordial dwarfism: Dr Charles Scott. In Seattle, Alex has access to a type of MRA scanner unavailable in the UK, which may help give John and Sue the answers they need about their son’s future development.

While in the US, the Connertys also find time to visit the ‘Little People of America’ convention, where they meet the parents of other primordial dwarves, and discover that they are not alone in coping with this incredible and disturbing condition. “Our son will walk with giants for the rest of his life,” Sue says. “But to us he is a titan, and already people stand in his shadow – his family among them.”

extraordinary people: the tiniest boy in britain

Five’s acclaimed documentary strand continues with more absorbing programmes exploring remarkable tales of human experience. Coming soon is the story of two-year-old Alex Connerty, Britain’s only primordial dwarf. Alex was born with an extremely rare condition that has stunted his development and means that he will grow to be no taller than three feet. This condition, barely understood by doctors, affects only 58 people in the world.

The film follows the Connerty family as they struggle to understand their son’s genetic disorder. So little is known about primordial dwarves that doctors cannot even predict how long Alex will live – whether it be two, five or ten years. What is known is that Alex is in severe danger of suffering a ruptured blood vessel in his brain – a common occurrence in primordial dwarves, whose brains often develop faster than their skulls.

In search of answers about Alex’s case, the family travels to the US to meet the world’s only expert in primordial dwarfs, in the hope that tests might tell them what their son’s future will hold. Whilst there, the Connertys visit the ‘Little People of America’ convention, where they meet the parents of other primordial dwarves, and discover that they are not alone in coping with this incredible and disturbing condition.

extraordinary people: the real sleeping beauty
21.00–22.00

extraordinary people: the real sleeping beauty

Five’s acclaimed documentary strand continues with more absorbing programmes exploring remarkable tales of human experience. Coming soon is the story of American Sarah Scantlin, who fell into a coma in 1985 at the age of 18, after being run over by a drunk driver. Doctors declared that recovery was impossible, and for 20 years she slept, until in 2005 something incredible happened – Sarah spoke. Nobody who had been in a coma-like state for so long had ever started speaking again.

This film follows Sarah as she attempts to prove once more that she can achieve the impossible. Her goal is independence: to feed herself, stand and walk unassisted. It also captures Sarah’s loved ones as they come to terms with the guilt, sacrifice and loss that they suffered during the years that Sarah ‘disappeared’.

Also featured in the programme is English woman Shahna Thwaites, who fell into a coma after a car accident as she returned from a festival. Doctors told her parents that she would never recover and that they should consider withdrawing life support, but after 23 days she awoke – beginning a ten-year struggle for recovery.

extraordinary people: the man who dreams the future
21.00–22.00

Five’s acclaimed documentary strand continues with another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme tells the story of Chris Robinson who claims to have foreseen the attack on the Twin Towers in New York and the 7/7 London bombings. When the desperate parents of a missing woman ask him for help, Chris’s claims are tested –can he really dream the future?

Chris Robinson is a seemingly ordinary man. He lives in Dunstable with his wife and children, working as a cleaner and living a normal life. But when he is asleep, it is a different story. He dreams of death and destruction, of places and events he has never seen or experienced –and it is this that has brought him international attention.

Six years ago, Chris spoke to Professor Gary Schwartz, then director of the Laboratory for Advances in Consciousness and Health at the University of Arizona. “He was saying things that went beyond anything that I had ever been taught,” recalls Schwartz. “My first question was: ‘Is Christopher Robinson sane? Is this a delusional man who is semi-paranoid, who is inventing a whole series of misperceptions and self-deceptions?’”

Although sceptical, Schwartz was sufficiently intrigued to accept the challenge to scientifically evaluate Chris’s claims. In a series of tests that have become known as the Arizona Experiments, Schwartz asked Chris to dream about the features of a unknown location to which he would be taken the next morning. One particular dream came as a shock: a nightmare about planes crashing into tall buildings. Two days later, the 9/11 attacks took place.

“Sometimes I actually see very, very clearly and very, very vividly what will happen, like 9/11 or the 7/7 bombing,” explains Chris. But sometimes his dreams are coded, with complex symbology which he has now learned to read.

Some of the most conservative and down-toearth institutions are surprisingly interested in the possibility of pre-cognition and other psychic phenomena. In 1995 it was revealed that $140 million had been spent on a long-running CIA project that used telepathic communicators in an attempt to glean intelligence information during the Cold War. One of its key personnel was John Petersen, now director of the Washington thinktank the Arlington Institute, which specialises in futurology. “I had heard the briefings at the Pentagon and there was no question that this was real, and that convinced me that there is far more to this reality than what conventional, mainline science understands and admits,” remembers Peterson.

However, not everyone is so certain. Professor Chris French, Head of the Anomalistic Psychology Research Unit at Goldsmiths College, University of London, is about to subject Chris Robinson’s claims to his own scrutiny. “As a scientist, I’m not convinced that precognition is real,” he says, hoping to find out the truth with a series of tests he has specifically devised for this programme.

In Japan, Chris Robinson has just passed a different type of test. He had been attempting to dream the whereabouts of student Mayuke Kawase, missing in the USA since 2001. At the end of last year, he proposed on live TV that she had been killed and her body buried on a campsite on Morgan Road, Oklahoma City, USA. And while this programme was being filmed, Mayuke Kawase’s body was indeed found on a campsite on that road.

News of Chris’s reputed talents have now reached a couple in Phoenix, Arizona – where Chris first came to international attention. Phil and Lynda Randolph want his help in a search that is tearing their lives apart. Can his dreams help find the Randolphs’ missing daughter, Marcy?

extraordinary people: the man who dreams the future

Five’s acclaimed documentary strand continues with more absorbing programmes exploring some remarkable tales of human experience.

Coming soon is the story of Chris Robinson –a man who believes that his dreams are a window into the future. A seemingly ordinary man, Chris lives in Dunstable with his wife, Bessie, and his three children. He works as a cleaner at a local haulage yard and gets up to ordinary things during the day. It is while he is asleep, however, that extraordinary things happen to him. Chris dreams of death and destruction, of places and events that he has never seen or experienced, and it is these dreams that have brought him attention all over the world.

Chris claims to have foreseen the terrorist attack on the twin towers in New York and the 7/7 bombings in London. In Japan, he is a huge celebrity, regularly called in to solve crimes on a major TV channel. His supporters include an American academic and an ex-US military intelligence officer –but his detractors dismiss his claims of precognition out of hand. Now, the desperate parents of a missing woman have called on Chris Robinson to help find their daughter, presumed dead after a plane crash.

Will his remarkable claims of premonitions stand up to scrutiny? Can Chris Robinson really dream the future? Professor Gary Schwartz of the University of Arizona intends to find the truth.

extraordinary people: 7/7
the man who should be dead
21.00–22.00

Five’s acclaimed documentary strand returns with a new series of absorbing programmes exploring remarkable stories of human experience. The first instalment in the series follows the incredible story of Danny Biddle –the most seriously injured survivor of the 7/7 London bombings.

When Essex-based Danny Biddle travelled to work on the London Underground on 7th July 2005, he was unaware that he was sitting just a few feet away from Mohammad Sidique Khan –the now infamous suicide bomber who was about to change Danny’s life forever. Just seconds after the train left Edgware Road station, it stopped in the tunnel as a huge explosion ripped through the carriages. Of all the flashbacks from which Danny still suffers, the most disturbing takes him back to the place where he landed after being thrown from the train: a small space between the train and the tunnel wall. “I watched people die,” he recalls.

As Danny lay in the tunnel, his screams attracted the attention of Adrian Heili –a passenger with army experience –who assured Danny that help was on its way. Then, with the assistance of Underground worker and ex-soldier Lee Hunt, Adrian proceeded to treat Danny’s horrific injuries. Danny’s left leg was severed above the knee; his right leg was severely lacerated; and he was covered in cuts and burns. “There was a chance that he wouldn’t make it,” remembers Adrian, “but I wasn’t prepared to accept that.”

Because of Adrian and Lee’s actions, Danny survived long enough to be rescued from the tunnel and taken to St Mary’s hospital. “Lee and Adrian were amazing,” says Danny. “I’d never met extraordinary people until that day.” But his life still hung by a thread. On seeing the extent of his patient’s injuries, general surgeon Ragheed Al Mufti was shocked: “I wasn’t expecting it… to be as bad as this,” he says. “It was like a war zone.”

The medics worked fast, but Danny’s condition worsened and he suffered a cardiac arrest. He was rushed into surgery where his spleen was removed while his heart was massaged. Both of his legs were then amputated and he was treated for the shrapnel injuries he had suffered –an amazing £8 in loose change was removed from his body.

During his first few days in intensive care, Danny had further operations on his legs, fought many infections, suffered multiple-organ failure and underwent an operation to remove his damaged left eye. However, against all the odds, he battled through and eventually awoke in late July to find his family around him; he still thought it was the day of the terrorist attack. On learning that he had lost his legs, Danny just shrugged his shoulders. “I’ve never been so proud of my son,” recalls Danny’s father, John.

After being transferred to a high-dependecy unit, Danny gradually grew in confidence and learned to accept his injuries. The staff never let him relax, all the time encouraging him to get up, get dressed and go to physiotherapy. By autumn, he was moved to Queen Mary’s Hospital in Roehampton where physiotherapist Maggie Uden remembers him as a star pupil. “His commitment to rehabilitation was amazing,” she says.

Danny and his fiancée, Lisa, had intended to marry in April 2006, but they were still living apart – Danny in a small hospital room, and Lisa a threehour round trip away. However, the couple’s plan remained intact and, by April 2007, the big day finally arrived. Among the guests at the wedding were the people who had figured in Danny’s rescue and recovery. “As soon as I saw Dan standing up,” says Lisa, “I was just totally overwhelmed.”

Danny continues to cope incredibly well with his disabilities and has started a new career as an accessibility specialist, but dealing with the mental trauma of his ordeal is an ongoing battle. However, he remains remarkably positive: “You just have to make a decision that you won’t let these people win,” he concludes.

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