Extraordinary People

extraordinary people

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, ‘7/7: The Man Who Should Be Dead’, meets Danny Biddle –the most seriously injured survivor of the 7/7 London bombings –and tells the inspiring story of his survival against all the odds.

Danny shares his feelings about trying to rebuild his life after a year in hospital, undergoing rehabilitation and finally getting married. Other programmes in this new series include ‘Britain’s Only Primordial Dwarf’, which follows the story of three-year-old Alex from Liverpool. In a race against time to acquire knowledge of their son’s fatal medical condition, Alex’s parents fly to the US to meet expert Dr Charles Scott. Will he give them the good news for which they long?

Also in the series, ‘The Man Who Dreams the Future’ profiles Dunstable man Chris Robinson, who believes that his dreams are a window into the future and claims to have foreseen the attack on the Twin Towers and the 2005 London bombings. Now, the desperate parents of a missing woman have called on Chris to help find their daughter, presumed lost in a plane crash. Will his remarkable claims stand up to scrutiny? Elsewhere, ‘The Real Sleeping Beauty’ tells the story of Sarah Scantlin, who astonished doctors when she began to speak after 20 years in a coma.

extraordinary people: half body, whole life
Monday Feb 26 21.00–22.00

This absorbing documentary retells the remarkable story of Rosemarie Siggins –an American woman who suffers from a rare genetic disorder which has led to the loss of her legs and the shortening of her spine. Having first visited her in 2005, Five’s Extraordinary People strand now catches up with Rose as she copes with the birth of her second child and deals with some pressing family business.

Rose, from Pueblo, Colorado, is a car nut – she’s been into cars, trucks and all things automotive since the age of three. She also has only half a body – but she refused to let her disability stop her from rebuilding and racing a 1968 Mustang. Born with a a rare genetic condition that meant her legs were deformed and without sensation, Rose had her legs amputated as a young child. However, she refuses to let this get in the way of living her life, even giving birth to a heathy son eight years ago.

Rose is determined to live as a full and normal a life as possible. She uses her arms and hands to get around, travelling on a skateboard at times and driving a specially adapted car which she manoeuvres using hand controls. She is grateful to her parents for making the difficult decision to have her legs amputated, rather than putting her in a wheelchair. Rose also chose not to wear the prosthetic legs her school wanted her to use, a decision which was supported by her parents. Fiercely independent, she can’t imagine life in a wheelchair, and enjoys the freedom of being able to get around by herself.

In 1999 Rose married Dave, who she had met two years earlier. When Rose learned that she was pregnant, she received little support from the medical community since nobody with her genetic condition had ever given birth before. Dr Wolfson was the only doctor not to recommend an abortion, but he did warn Rose that her extraordinary and ground-breaking pregnancy was putting her life on the line. A caesarian was performed at the top of her uterus, a more dangerous method of delivery, and a healthy boy named Luke was born.

The joy of Luke’s birth was followed by tragedy when Rose’s mother was diagnosed with terminal cancer. Rose’s mother had held the family together, and Rose felt that her support system had disappeared. She and Dave moved back to the family home to take care of her father, who has Alzheimer’s and schizophrenia; and her adult brother Jimmy, who has a mental age of eight and is prone to violent outbursts.

Rose, however, is a woman who won’t take no for an answer. Having already had a baby against medical advice, she went on to become pregnant again and gave birth to a daughter. But soon after, she fell into a depression when she was confined to bed. Now Rose encounters fresh concerns over her mobility, with the aches and pains caused by the immense strain on her arms leading her doctor to take a series of X-rays. With these images, we can now see Rose’s incredible physiology from the inside for the first time.

Since her mother’s death, Rose has been getting used to being the centre of the family, and she now needs to take care of some pressing emotional business. The cameras follow Rose as she takes her ailing father on a once-in-a-lifetime road trip to meet his long-lost brother and a branch of the family Rose has never met. And at home, she takes the first steps to rebuilding her relationship with her own brother, Jimmy.

Monday 19 February, 21.00–22.00 on FIVE

This fascinating documentary tells the remarkable story of Abby and Brittany Hensel, the world’s only known dicephalus conjoined twins. Although they are two completely separate people, these accomplished teens share a body and have just two arms and legs between them.

Born in 1990, the girls have been brought up in a small, tightly knit community in Minnesota, almost completely protected from prying eyes and inquisitive stares. To their friends and family, they are distinct people with very different personalities, needs, tastes and desires. But to the outside world they are a medical mystery – particularly given the fact that they can do virtually all the same things as their friends, including playing the piano, riding a bike, swimming and playing softball. “Their personalities make them inspirational,” says their mother Patty. “They never give up; anything they want to do, they go out and do it.”

The medical world is keen to find out how two separate brains and nervous systems can work in such a perfectly co-ordinated way, but the twins and their family have always resisted non-essential medical tests. “The family want to treat them as though they are just like everyone else,” says Joy Westerdahl, the girls’ doctor, who admits that it is a mystery how their unique physiology functions.

As they enter adulthood, the twins are likely to leave the haven of their home town and face the wider world. In preparation for that time, they have taken part in this intimate documentary to show the world what it is like to be joined for life. The programme follows them as they pass their driving test and celebrate their 16th birthdays.

We also join them on a big summer trip to Texas. Here, they stay with family friend Tamara Vogt, whose own conjoined twins died as babies. Tamara is full of admiration for the pair. “They’ve given me strength from within that I didn’t even know I had,” she says. But even under the watchful eye of Tamara, this so-called holiday entails significant stress for the girls. They face stares from the outset, and are upset when, at a Major League baseball game, a news cameraman turns his camera on them. They let him film them but it ruins their day. “We don’t mind when people ask questions or talk to us, but we hate it when people take pictures and try to videocamera us,” they explain. “And we will throw a fit about it, and make them embarrassed.”

Despite the girls’ strong characters, their baseball-game encounter is a stark reminder of what lies ahead of them. How will the wider world react to two separate people joined in one body? And how will this reaction affect the girls?

Monday 12 February: 21.00–22.00

Continuing tonight is the series of absorbing documentaries exploring remarkable stories of human experience from all over the world. Tonight’s programme focuses on a Ugandan teenager born with an extremely rare condition that means his skull is forced into a cone shape as he grows, squashing his brain and destroying his sight.

Petero Byakatonda, a 13-year-old boy from a remote village in Uganda, suffers from a genetic disorder called Crouzon’s syndrome. The illness affects around one in 10,000 newborns and is normally treated within a few months of birth. But because of Petero’s isolation, he was diagnosed only recently, and it is incredible that he is still alive. In Crouzon’s syndrome, the bones of the skull are fused together permanently so the head cannot expand normally as the brain grows. The brain is therefore forced to grow in the direction of least resistance. This, as leading craniofacial surgeon Dr Kenneth Salyer explains, can lead to constriction “to the point of herniation of the base of the brain, and death.” In altering the structure of Petero’s skull, Salyer and his team may be able to give the boy some self-confidence, restore his sight and save his life. But in order for Petero’s surgery to be successful, says Salyer, there is a “major need for him to be treated immediately.”

All his life, Petero’s misshapen head and bulging eyes have meant that he has been feared and tormented by other children in his village. “They used to bully me all the time,” he says. His mother, Dorothea, explains that kids used to throw stones at Petero every time he walked to the well. He was treated like a person at home but an animal everywhere else. Now, however, a Dallas-based surgical team offers hope.

Petero first came to the attention of Kenneth Salyer when a Ugandan social worker was visiting Petero’s village. She took a photograph of Petero and showed it to a doctor friend who then showed it to Salyer. Though he is based in America, Salyer was interested in Petero in his capacity as head of a charity called the World Craniofacial Foundation. With money donated by this foundation, Petero, having never left his village before, now finds himself leaving his family to travel across the world for a series of life-threatening operations.

As he arrives in the US, Petero is fascinated by everything he sees. “There are so many lights,” he reflects as a taxi takes him and social worker Immaculate to the house that will be their home for the near future. “There is no darkness anywhere”. But it is not just an alien culture to which Petero must become accustomed – over the next seven months, he will spend a great deal of time in hospital as he undergoes a series of operations to completely rebuild his head.

After weeks of tests and medical examinations, Petero is deemed ready for surgery and is wheeled into the operating theatre, clutching his new toy phone. In this first operation, Salyer and his team will reconstruct the top of the skull and take the pressure off the brain and the optic nerve. The surgery is incredibly complex. As surgeons make an incision in Petero’s scalp, they discover a venous plexus – an abnormal collection of blood vessels – which increases the chances of bleeding. They must then peel the skin back over Petero’s face, before drilling a series of holes in his skull and moving his brain away from the bone. As they remove a large piece of skull, the pressure on Petero’s brain is eased and his sight is effectively saved. But now the hard work of restructuring the head and face begins.

Two months after his first operation, the change in Petero is hard to believe. His head now looks normal, but perhaps the most amazing transformation is in his personality. Whereas he used to be a shy, reclusive boy, ashamed to show his face in public, he is now playful, excited and outgoing. But with two more operations and many months of recovery yet to go, Petero still has a long journey ahead of him.

Monday 5 February: 21.00–22.00

Tonight’s documentary focuses on Tourette’s sufferers who have chosen to undergo an experimental operation so controversial that the vast majority of neurosurgeons refuse to perform it.

Keith lives in a quiet neighbourhood in Memphis, Tennessee with his wife and two children. Like many other sufferers of Tourette’s syndrome, he is plagued by vocal tics and uncontrollable movements. But unlike others, Keith’s condition has become so severe that it controls every aspect of his life and threatens to destroy him. Keith has worked as a paediatric nurse for 12 years, but his career is now in jeopardy. Constant use of taboo racial slurs, in particular “the N-word”, as he refers to it when in control of his speech, has led to him losing his job. But most dangerously of all, Keith continually fights the urge to crash his car. “My personality is a puppet,” Keith explains as he describes his helplessness, “and my brain is the puppet master.” But a radical new treatment called deep brain stimulation (DBS) may offer Keith hope.

Dr Donald Richardson, professor of neurosurgery at Tulane Hospital in New Orleans, has developed a treatment for Tourette’s sufferers that involves the insertion of electrodes into the brain. He believes this treatment is the answer to the prayers of sufferers like Keith, but it is controversial. DBS is fraught with dangers which cannot be evaluated. Its results are unproven, and even experts in the field have not reached a consensus on the exact placement of the electrodes. Critics accuse Richardson of experimenting on his patients, but his initial results have spurred the doctor on.

Richardson’s first patient, 32-year-old Sean from rural Alabama, is something of a success story. A keen hunter, Sean can only now walk through the woods with a shotgun because he has thousands of pounds’-worth of medical hardware in his body. Electrodes positioned in the thalamus of his brain are powered by brain pacemakers buried in his chest, which are in turn controlled by a remote unit. While the system may sound clumsy, the difference it has made in Sean is incredible to see. Footage taken before he had the operation shows Sean unable to sit still, continually punching himself about his head and genitals, and constantly swearing. Now he is able to go about his daily life with no interruption, and conduct normal conversations. Sean is persuaded to temporarily turn his pacemakers off to relive his past life, and the change is instantaneous. Now, as soon as Sean regains control using his remote unit, he cannot believe the change in himself. “How did I ever function in everyday life with this?” he reflects.

News of Sean’s turnaround soon travelled through the Tourette’s-suffering community, and Keith in Memphis gained hope. Recording a video displaying his symptoms, Keith attempts to persuade Dr Richardson to repeat his revolutionary technique. On meeting Keith, Richardson is convinced of the severity of the condition and soon agrees to make Keith the third person ever to receive DBS treatment for Tourette’s. A date is set for the operation and it is not long before Keith finds himself writing his will, setting the lawn sprinklers to automatic, and saying goodbye to his dog as he travels with his family to New Orleans.

The surgery itself is complicated. Richardson and his colleagues take several brain scans to enable them to build a three-dimensional plan of Keith’s brain. They then map the passage of the electrodes into the thalamus. Kept conscious during surgery so that his brain activity can be monitored, Keith has his skull screwed onto the operating table to prevent tics. After hours of surgery, Keith is wheeled into the recovery room, where his family can gauge the effects of his operation. It seems as though Keith is another success story for Dr Richardson but, just weeks after Keith’s treatment, Richardson shocks the medical community once more: in his most controversial treatment to date, he plans to carry out his procedure on a 13-year-old boy.

Monday 29 January: 21.00–22.00

Continuing this week is the new series of absorbing documentaries exploring remarkable stories of human experience from all over the world. Tonight’s programme focuses on an American teenager who has developed a unique strategy to cope with his disability.

Ben Underwood lives with his family in the suburbs of Sacramento, California where he attends his local high school. Like any other 14-year-old boy, he loves to play with his friends and chat to girls his age, with whom he seems popular. He looks like any other boy, until he removes his $4,600, hand-crafted eyes. Ben is blind and, like other blind people, relies on some specialist equipment to survive. He uses talking computer software and a Braille machine to help with his homework.

Ben does not have a guide dog, uses no stick, and does not even use his hands to aid his mobility. Instead, he has developed something of a supersense: he is the only person in the world who navigates using clicks. As he walks, he makes a continuous clicking noise with his tongue. As these clicks echo around him, he is able to draw up a detailed mental plan of his surroundings and adjust his direction accordingly. So accurate is his technique that he is even able to go rollerblading on the street, negotiating narrow gaps between parked cars that even sighted children might find challenging. In fact, Ben’s mother, Aquanetta, finds that her son is far more attentive to the dangers of the road than his friends, always the first to move onto the pavement when a car approaches.

Ben first noticed his talent at the age of seven, when at summer camp. While it began as just a habit, Ben explains, he soon realised that it had potential benefits for navigation. He began to practise every day and developed the system to the point it is at today. It is the fact that Ben is entirely self-taught that is perhaps most astonishing and has led people to use the term ‘genius’ when referring to the boy.

Dr James Ruben, an ophthalmic surgeon who has worked with Ben for some time, could not believe what he saw when he first met the patient. “This can’t be possible,” he thought on spotting the blind boy sitting in his waiting room playing video games. But it was possible and Dr Ruben found himself working with a unique talent. Once he had accepted that Ben was truly blind, Dr Ruben was “flabbergasted” and shared the remarkable story with the local press. It was not long before the news rippled throughout national press and Ben soon found himself featuring in a photoshoot with America’s People magazine and appearing on the popular chat show, ‘Oprah’.

Throughout his experiences, Ben has found that everyone who meets him cannot believe their eyes. When he first joined his current school, most people did not even notice that he was blind. There appears to be nothing that his friends can do that Ben will not attempt and conquer. As one of his friends puts it: “It is shameful, being beaten by a blind man on a video game!”

According to Dr Ruben, one of the secrets behind Ben’s talent is his remarkable mother. Along with the rest of the family, Aquanetta makes no allowances for Ben’s blindness and treats him as if he can see. She also maintains a “no-limits” philosophy and grants her son the space and the freedom he needs to excel. Refusing to allow Ben to see her afraid or crying, Aquanetta believes that if she never appears to be feeling sorry for her son, he will never feel sorry for himself. But perhaps the most important factor in the development of Ben’s talent is the attitude of the boy himself. “Ain’t nothing wrong with me”, he insists.

Extraordinary People returns for a brand-new series of remarkable stories, beginning with the strange tale of David Fitzpatrick. Before the 4th of December 2005, David was a normal 25-year-old with family, friends and memories. That afternoon, he suffered one of the rarest forms of memory loss ever recorded. The condition, known as a psychogenic fugue, wiped his entire memory clean, leaving him with no identity. This film follows David as he tries to recover the life he had before and attempts to start all over again.

When David Fitzpatrick found himself standing in front of Kings College Hospital, London, he had no idea how he had got there – or who he was. The confused young man was admitted to the hospital as an ‘unknown male’ and his case was referred to the local Missing Persons Unit. Four days later, maps brought in by the police provided a breakthrough when David recognised the address of his old football coach, Mike Rook.

Worried family and friends flocked to David’s hospital room, hoping to find out what had happened. The experience was overwhelming for David and traumatic for his family, who were devastated when he failed to recognise them. His mother Jeanette recalls that her son displayed “no reaction whatsoever” when she embraced him – a gesture which David remembers as “like a stranger holding me”.

With doctors uncertain of how long it will take for his memory to return, David is embarking on a journey of discovery in the hope of filling in the blanks. While hopeful at the prospect of retrieving his memory, he is also apprehensive at the thought of uncovering what made him go into his fugue in the first place. What was it that prompted his brain to go into shutdown and wipe all his memories of family, experiences and even world events?

David begins his quest by revisiting his childhood home, but is disheartened that the trip fails to trigger any memories of his early years. And when a visit to his old football club sees David awarded the Manager’s Player award for his achievements in the previous year, he cannot remember the matches that showed off his skills.

Without his own memories, David is forced to rely on the recollections of others. “I have to accept what they say,” he explains. “There’s no proof apart from what they are telling me.” He says that he found it difficult to trust people at first, and discovered that his family and friends had conflicting recollections of who he was.

In an effort to learn more about his true self, David goes to his old school to hear about what he was like as a boy. He meets up with his old form teacher, who recalls the young David as a ‘scallywag’ and ‘likeable rogue’. After hearing stories about his schoolday antics, reading his old reports and examining photographs, David begins to feel more confident that his memories may be unlocked: this trip has emphasised to him that he existed in the past, even though he cannot remember it. “It’s given me optimism that things will come back quite quickly,” he says. “I didn’t think that before.”

However, David soon realises that the quest to uncover his past will not be straightforward. Not only does he have a six-year-old daughter he must get to know again, but he finds out that a break-up with the woman he saw as the love of his life had sent him into a spiral of self-destructive behaviour. At the time, he hit the drink hard and was even banished from friends’ houses. Was it this chaotic turn of events that pushed him into his fugue?

Now that David’s friends and acquaintances have provided him with an insight into the man he was before the fugue, he has a unique opportunity to start again. Painful though the experience has been, he has confronted his past. “I’m back at zero,” he says. “This is where my life starts.”

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