Extraordinary People

The series exploring remarkable tales of human experience continues this week with the story of a woman who calls herself ‘robochick’. After losing her eyes in car crash, Cheri Robertson was fitted with a bionic vision system and now has almost 500 electrodes implanted in her brain to help her see. The film also follows the experiences of a man who is in possession of the world’s most advanced bionic hand.

In 1989, Cheri Robertson was involved in a serious car accident which left her in a critical condition. Her head injuries were so severe that her eyes had to be surgically removed. After 15 years without her vision, Cheri learned of a revolutionary treatment that gave her new hope that she would see again.

Since the 1960s, New York scientist Dr William Dobelle had been developing an artificial-vision system. By implanting a chip into the patient’s brain, Dr Dobelle was able to channel electrical impulses through a pair of special eyeglasses. The impulses would in turn stimulate the brain’s visual cortex via a camera mounted on the glasses.

The controversial procedure was rejected by the Food and Drug Administration (FDA), so Dr Dobelle ventured abroad to implement clinical trials. In 2004, Cheri travelled to Portugal after having paid $90,000 for the operation.

The surgery itself was incredibly invasive and risky – hundreds of electrodes were fitted onto Cheri’s brain and holes were drilled into her skull in order to position special hardware.

Because of the dramatic nature of the operation, it took Cheri a year to recover. After this period of recuperation, the camera was finally plugged into the hardware in Cheri’s skull. Once the vision system was activated, she was able to see dots of light, which would suggest that the operation produced some degree of success.

Since 2004, Cheri’s level of vision remains stable. However, the first patient to undergo the surgery, Jens Naumann, who also appears in the film, says that he is considering having the system removed because it is no longer functioning. Indeed, Cheri faces an uncertain future. The surgery has still not been been approved by the FDA, and further trials have not been granted funding. This casts doubt over whether Cheri will get the follow-up treatment and system upgrade she requires.

It is a decidedly more positive story for Surrey teenager Evan Reynolds. He has access to some of the most advanced bionic technology in the world to assist with his disability. Evan lost his left hand and part of his arm when he leaned out of a moving car. His arm was caught on a post and degloved – the skin was peeled back from the limb. Fortunately for Evan, he has been able to test-drive the iLimb, a bionic hand developed by Touch Bionics in Scotland. The first of its kind, the revolutionary device fits onto what is left of the existing arm and works in the same way a real hand does – via messages sent by Evan’s brain to his phantom limb.

The series exploring remarkable tales of human
experience continues with a profile of Dede, an
Indonesian man suffering from a skin condition that
has left him with tree-like growths on his hands and
feet. Unable to work and forced to appear in a
demeaning circus troupe, Dede’s only hope lies in
the visit of a dermatology specialist who may be
able to diagnose his condition. Meanwhile, a man in
Romania with a similar affliction undergoes
experimental surgery to cure him.
In a remote village in Indonesia, 36-year-old
fisherman Dede struggles to live an ordinary life.
He has baffled doctors with an affliction so terrible
that he can no longer work or venture out in
public. Dede has root-like structures growing out
of his limbs – branches that can grow up to five
centimetres a year, and welts that cover his body.
The mystery illness has robbed Dede of his
independence and he lives in the fear that the welts,
which first appeared when he was 15, may
eventually cover his eyes and mouth, leaving him
unable to eat or breathe. Dede’s wife left him
because of the disease, and his two teenage
children are now being cared for by his sister.
“I want to be able to provide for them,” he says.
“I hope I live long enough to see my grandchildren.”
But a far more troubling question concerns Dede –
has he passed on his ailment to his children?
Dede’s case has come to the attention of Dr A
Gaspari, a dermatologist at the University of
Maryland. He makes the long journey by plane,
boat and foot to Dede’s village in the hope of
diagnosing his illness. Upon meeting the patient,
Dr Gaspari cannot hide his shock. “I’m absolutely
stunned,” he says. “I’ve never seen anything like
this before.”
A physical exam leads Dr Gaspari to suspect
that Dede’s condition is wart-like in nature. The
warts have grown and spread, creating
cutaneous horns on Dede’s hands and feet, and
Dr Gaspari is concerned that they could become
cancerous. “It is life threatening for the patient. It is
absolutely real and requires attention,” he says.
To establish the exact nature of the underlying
infection, Dr Gaspari removes four warts and
takes blood samples. The procedures are carried
out with a basic medical kit on the floor of Dede’s
hut, and Dr Gaspari has to be careful to control
the bleeding from the warts, which have their own
internal blood supply.
With his samples gathered, Dr Gaspari flies
back to the States to begin testing, while Dede
returns to the only job he can keep. He is a
member of a travelling circus clan, alongside other victims of terrible skin diseases and deformities.
The clan’s manager forces them to perform
demeaning and potentially dangerous acts in
front of large crowds. In the face of their adversity,
the clan members have formed friendships based
on their mutual status as ‘freaks’ and outsiders.
After two months of testing, Dr Gaspari
concludes that Dede’s condition is due to an
immunodeficiency. Dede’s immune system is
unable to cope with the warts, which have grown
out of control. “What’s unique about Dede is
probably the extent and severity of the infection
rather than the infection itself,” he says. The test
results indicate that the growths are not
cancerous and that Dede’s children are unlikely to
inherit the disease, and Dr Gaspari has drawn up
a list of drugs that could tackle the warts. Is the
end finally in sight for Dede’s suffering?
As Dr Gaspari opts to treat Dede with a medical
solution, doctors in Romania are attempting to
treat a man with a similar affliction. A farmer by the
name of Ion has wart-like growths on his hands
and feet that have prevented him from working.
But in Ion’s case, doctors have decided to
embark on an experimental five-hour surgery to
peel off the growths on one of his hands. Will this
risky operation succeed?

Five’s acclaimed documentary strand continues
with another remarkable tale of human experience.
This film profiles autistic artist Stephen Wiltshire,
who is able to draw massively detailed landscapes
entirely from memory. The film charts his progress
from childhood to international success as an
artist, and shows how he has overcome his autism
to cope with social situations and achieve a limited
form of independence.
Stephen Wiltshire is a 33-year-old autistic man
with an extraordinary talent. He is one of less than
100 people in the world who is recognised as an
autistic savant. Whereas some savants excel in
mathematics or music, Stephen is an
accomplished artist, and is capable of producing
highly accurate drawings of buildings and cities
after seeing them just once.
Professor Simon Baron-Cohen, one of the
country’s leading experts in autism, claims
Stephen is remarkable because he represents a
combination of outstanding abilities, including
spatial awareness, memory and attention to
detail. “It may be that some people would have
some of these skills, but not all of them,” he says.
“In Stephen, they’ve all come together and he
must be one in a million.”
Although Stephen is today a quiet and confident
young man, he endured a difficult childhood as
family and teachers struggled to cope with his
autism – a condition that was, at the time, poorly
understood and rarely diagnosed. An anxious,
mute child, Stephen only expressed himself in
screaming fits, until teachers realised that drawing
not only calmed him down – it also revealed an
unimaginable talent. “I calmed myself down,
because then I could do drawing and become
sensible,” Stephen recalls.
Cityscapes and buildings quickly became
Stephen’s artistic focus, possibly because they
represent the kind of stability, solidity and repetition
that autistic people often crave. In a short space of
time, Stephen became internationally renowned
for his strikingly detailed and technically accurate
drawings, and since his teenage years he has
travelled the world sketching famous buildings and
cities. He receives commissions from high-profile
clients and even owns his own gallery near
Trafalgar Square.
However, Stephen’s former head teacher, Jude
Ragan, is quick to point out that his artistic success
is largely possible thanks to the way in which he has
overcome the crippling social insecurity that
characterises autism. “It is extraordinary that he has
learned to travel by himself, because he will no
doubt have a high level of anxiety of any change,
anything different, anything that might change,”
she says. Today, Stephen’s life remains dominated
by a fixed routine, in which even simple interactions
such as a buying a sandwich can seem daunting
and complex.
Whilst Stephen’s work has captivated people
around the world, the debate continues as to
whether an autistic person, who can grasp
technical skills so well, is capable of creating
something original. Are Stephen’s pictures
accomplished technical drawings or novel works
of art? His family friend, Michael Vincent, is one of
many who believes the latter. “I defy anyone to
look at his pieces and not to come away moved
or touched or inspired,” he says.
Now Stephen is about to face one of his
greatest challenges yet. He has five days to draw
a four-metre-long panorama of London based on
a 15-minute helicopter ride above the capital.
Can he accurately reproduce the skyline of his
home city solely from memory?

Five’s acclaimed documentary strand continues with another remarkable tale of human experience. This film profiles autistic artist Stephen Wiltshire, who is able to draw massively detailed landscapes entirely from memory. The film charts his progress from childhood to international success as an artist, and shows how he has overcome his autism to cope with social situations and achieve a limited form of independence.

Stephen Wiltshire is a 33-year-old autistic man with an extraordinary talent. He is one of less than 100 people in the world who is recognised as an autistic savant. Whereas some savants excel in mathematics or music, Stephen is an accomplished artist, and is capable of producing highly accurate drawings of buildings and cities after seeing them just once.

Professor Simon Baron-Cohen, one of the country’s leading experts in autism, claims Stephen is remarkable because he represents a combination of outstanding abilities, including spatial awareness, memory and attention to detail. “It may be that some people would have some of these skills, but not all of them,” he says. “In Stephen, they’ve all come together and he must be one in a million.”

Although Stephen is today a quiet and confident young man, he endured a difficult childhood as family and teachers struggled to cope with his autism – a condition that was, at the time, very poorly understood and rarely diagnosed. An anxious, mute child, Stephen only expressed himself in screaming fits, until teachers realised that drawing not only calmed him down – it also revealed an unimaginable talent. “I calmed myself down, because then I could do drawing and become sensible,” Stephen recalls.
Cityscapes and buildings quickly became Stephen’s artistic focus, possibly because they represent the kind of stability, solidity and repetition that autistic people often crave. In a short space of time, Stephen became internationally renowned for his strikingly detailed and technically accurate drawings, and since his teenage years he has travelled the world sketching famous buildings and cities. He receives commissions from high-profile clients and even owns his own gallery near Trafalgar Square.

However, Stephen’s former head teacher, Jude Ragan, is quick to point out that his artistic success is largely possible thanks to the way in which he has overcome the crippling social insecurity that characterises autism. “It is extraordinary that he has learned to travel by himself, because he will no doubt have a high level of anxiety of any change, anything different, anything that might change,” she says. Today, Stephen’s life remains dominated by a fixed routine, in which even simple interactions such as a buying a sandwich can seem daunting and complex.

Whilst Stephen’s work has captivated people around the world, the debate continues as to whether an autistic person, who can grasp technical skills so well, is capable of creating something original. Are Stephen’s pictures accomplished technical drawings or novel works of art? His family friend, Michael Vincent, is one of many who believes the latter. “I defy anyone to look at his pieces and not to come away moved or touched or inspired,” he says.

Now Stephen is about to face one of his greatest challenges yet. He has five days to draw a four-metre-long panorama of London based on a 15-minute helicopter ride above the capital. Can he accurately reproduce the skyline of his home city solely from memory?

Five’s acclaimed documentary strand continues with another remarkable tale of human experience. The Girls with Too Much Skin explores the lives of two sets of sisters who suffer from one of the most extreme skin diseases in the world. Lucy and Hannah Betts and Dana and Lara Bowen have harlequin ichthyosis, a painful and incurable condition that brings with it the constant threat of fatal infection.

This rare genetic disorder means that sufferers grow more skin in one day than a healthy person grows in two weeks. The Betts and Bowen sisters all inherited the condition from their parents, who carry the mutated gene. Historically, those stricken with the disease did not live long, and these days there is a 50 per cent survival rate.

Clive Betts confesses that when he first saw Lucy, his first-born, he did not expect her to live. Both Clive and his wife, Jan, were unaware that they carried the gene, and the way Lucy looked came as a huge shock. “She looked more like something from space – like an alien,” Clive says.

According to Professor John Harper, a defect in the skin, the body’s largest organ, brings with it a multitude of problems: “They’re just not compatible with living.” With no true epidermis, the thick layer of skin can crack, making it vulnerable to infection. The Betts and the Bowens have similar routines to prevent this from happening. Twice a day, the girls endure an excruciating exfoliation process. After bathing, their bodies are slathered from head to foot in a rich barrier cream. Hannah is philosophical about the discomfort, saying, “Sometimes it’s a pain in the neck, but we have to deal with it, you see.” It is not just the girls’ bodies that need to be clean.

Every day, their houses are sterilised and their bedclothes, which overnight become saturated in the barrier cream, must be laundered. Despite the heartache of having two daughters with the disorder, the Betts family is grateful for each girl having a support system in the form of her own sister. With Lucy legally blind because of dead skin cells scratching and damaging her corneas, Hannah becomes her sister’s eyes when the girls are out and about. And as Hannah suffers from cerebral palsy, Lucy’s role as big sister becomes vitally important. Hannah realises she would be lost without Lucy. “If I didn’t have a sister with the same condition, I’d be lonely and I don’t know what I’d do,” she confesses.

With only six other sufferers in the UK, the Betts and the Bowens have a strong bond. But neither family realise just how closely connected they are until the girls’ DNA is analysed. While researchers try to isolate the harlequin mutatation, no one expects what other secrets lie locked inside the genetic code. With a particular irregularity in their DNA in common, it can mean only one thing – the two families are related by blood. As doctors shed light on the intricacies of the disorder and work towards finding a cure, the two families themselves find new hope as they try to solve the genetic mystery that lies buried in their past.

Wednesday 12th March at 9:00pm on five

Five’s acclaimed documentary strand continues with another remarkable tale of human experience. Oscar Pistorius, now 21, was born with a rare condition that meant both of his legs had to be amputated.

With the help of state-of- the-art artificial legs, he has become one of the fastest disabled runners in the world, capable of challenging able-bodied athletes. But the athletics authorities claim that his ‘blades’ give him an unfair advantage. This film follows Oscar over the course of a year as he fights for the right to compete at the highest level.

Eleven floors up, at the Institute of Biomechanics and Orthopaedics in the German Sports University in Cologne, Oscar Pistorius is watching as his legs are pressed in a mechanical vice. A graph appears on the screen next to the machine, recording the force required for each degree of flex. Pistorius yawns and wanders off to text his friends about his upcoming 21st birthday. He can do that; he has more than one pair of legs.

Oscar Pistorius was born in Johannesburg, South Africa, on November 22, 1986, with a rare birth defect which meant he had no fibula in either leg. After consulting 12 different surgeons, his parents, Sheila and Henke, took the momentous decision to amputate both legs halfway between the knee and ankle. He was just 11 months old. Oscar grew up in a competitive family in a sports-mad country. His determination to keep up with his able-bodied friends meant that from an early age, he began to develop a leg action that would have far-reaching consequences. Oscar’s competitive streak led him to take up the national obsession, rugby; but when he received a serious knee injury following a tackle, he was persuaded to try a new sport –running.

Just eight months later, in 2004, Oscar stunned the world by winning the 200m at the Athens Paralympics – despite a false start that lost him nearly two seconds. The next year, he finished sixth in the able-bodied 400 metres at the South African National Championships. Then, in March 2007, he took second place in the same race and looked ready to break onto the world stage in able-bodied races. Oscar was now the fastest Paralympic athletic to have ever lived – and was set to challenge the fastest able-bodied runners in the world.

But Oscar’s seemingly unstoppable rise was brought to an abrupt halt in July 2007, when the International Association of Athletics Federations (IAAF) collected evidence during his race against able-bodied runners in Italy. They suggested that he was running in a significantly different way to able-bodied athletes, pointing out that Oscar is the only 400-metre runner in history to run his second 200 metres faster than his first. After his way was initially blocked, Oscar was allowed to participate in his first international able-bodied events in Rome and Sheffield, and the IAAF agreed to pay for tests in Cologne to establish the blades’ legality.

In years to come, people will look back at these biomechanical tests as the blurring of what is meant by able-bodied and disabled. By then, Pistorius’s silhouette may well have become one of the most iconic images in sport. But will he be allowed to fulfil his dream of competing against able-bodied athletes on the international stage?

Wednesday 5th March at 9:00pm on five

Five’s acclaimed documentary strand exploring remarkable tales of human experience from across the globe continues. This film catches up with progeria sufferer Hayley Okines, who has been the subject of two Five documentaries in the past.

‘Hope for Hayley’ continues the little girl’s bittersweet story in perhaps the most important year of her life so far –one in which she deals with the news that her condition may at last be curable. Progeria is an aggressive disease which ages its sufferers eight years for every year of their life. That is why, at nine years of age, Hayley has the body of a woman in her 70s.

Hayley’s parents, Kerry and Mark, have recently learned of a breakthrough treatment in the United States. A new drug is being developed that could arrest and even reverse the effects of the disease. Hayley will be a guinea pig in the trials, along with 14 other progeria kids. Although this development brings the Okines fresh hope, the news is also tinged with sadness after the death of Hayley’s best friend, an 11-year-old progeria sufferer. With every month and year so precious, the Okines now face an excruciating wait for the trials to be approved by the Federal Drugs Agency (FDA).

Having been the subject of numerous documentaries and talk shows, Hayley has become a poster child for progeria awareness. She is constantly recognised by members of the public, and her parents would not have it any other way. They attend the progeria reunion in the United States each year, building a support system with the families of other sufferers from around the world.

Whilst awaiting news on whether the drug trials will go ahead, the Okines receive a visit from a Belgian family – the Vandeweerts – who, against all odds, have two progeria children. Their son is also registered to participate in the trials, and the two families discuss their concerns about the potential dangers of the new medication. Their fears are well-founded, as so far the drug has only been used on mice, and the side effects that may occur in humans are yet to be tested. Researchers have explained that changes in patients could be obvious after just three days on the medication, and Kerry is worried that the children’s frail bodies will not be able to cope. With a series of tests taking place in the States every 16 weeks, Hayley’s parents voice their fear that each time she boards the plane, she might not be
coming home again.

The film provides an intimate and revealing insight into the life of this extraordinary little girl. Hayley is more conscious of her condition than ever, and startling in her frankness. She talks fluently and willingly on camera to director James Routh, who five years ago set out to make a unique record of her tragically compressed life. Her feelings on the death of her best friend – which has brought the reality of her disease into even sharper relief –are explored, as are her mechanisms for coping with grief and fear.

Wednesday 27th February at 9:00pm on five

Five’s acclaimed documentary strand returns for new run of programmes exploring some remarkable tales of human experience from across the globe. The series opens with an inspiring new film about conjoined twins Mohammed and Ahmed Ibrahim, featuring exclusive medical scenes and candid archive
footage of their journey towards separation.

The Boys Joined at the Head tells the incredible story of the Ibrahim twins for the very first time, following their journey from their birthplace in Cairo to the hospital in Dallas, where pioneering surgery
to separate them took place in 2003. The film also documents their recovery back home in Egypt.

The chances of twins being born conjoined at the head with a shared supply of blood to the brain are ten million to one. When leading American craniofacial surgeon Dr Kenneth Salyer received photographs of the boys from their doctor in Egypt, a plan for a pioneering medical procedure was immediately set in motion.

Accompanied by their parents and a team of medical experts, the twins take their first step in the path to separation at just one year old – a trip to Medical City in Dallas. The harrowing year of testing that precedes the surgery is revealed in detail in archive film, medical imaging and stylised reconstructions. During the examinations, a breakthrough is made –the twins have largely separate brains, sharing only ten per cent of their brain tissue. This means that the operation has a greater chance of success. The gruelling tests culminate in tissue expanders being put under the twins’ skin for five months to ensure enough skin is available after the separation.

As well as footage from the operation, the documentary uses interviews with key medical personnel. During the 34 hours in the operating theatre, a total of 60 clinicians participated. Behind the scenes there are many more people involved, including medical modellers. Without these experts’ intricate and accurate plastic models of the twins’ heads, the surgery would have had to be based on two-dimensional scans and guesswork.

The film also portrays the emotional side of the twins’ story through interviews with their parents. The deep bond that the Ibrahim family formed with Dr Salyer and his team in Dallas is revisited when the twins return to America four years later for follow-up tests.

The Boys Joined at the Head comes full circle back in Cairo, where the twins’ physical, mental and social development is played out with images of them attending their local school. With an uncertain future looming, the boys’ parents reflect on their experiences so far and discuss their hopes and fears for their sons.

Wednesday 20th February at 9:00pm on five

Five’s acclaimed documentary strand returns for a new run of programmes exploring some remarkable tales of human experience from across the globe. The series opens with ‘Hope for Hayley’, a new film catching up with progeria sufferer Hayley Okines who has been the subject of two Five documentaries in the past.

‘Hope for Hayley’ continues the little girl’s bittersweet story in perhaps the most important year of her life so far –one in which she deals with the news that her condition might at last be curable. Just months after the death of Hayley’s closest friend – an 11-year-old fellow progeria sufferer –she is to take part in the human trials of a drug that researchers believe could arrest and even reverse the effects of the disease. The documentary follows Hayley and her family as they make several trips to the Children’s Hospital Boston to take part in the clinical trials of a revolutionary new drug.

The film also provides an intimate and revealing insight into the life of this extraordinary little girl. Now aged nine, Hayley is more conscious of her condition than ever, and startling in her frankness. She talks fluently and willingly on camera to director James Routh, who five years ago set out to make a unique record of her tragically compressed life. Her feelings on the death of her best friend – which has brought the reality of her disease into even sharper relief –are explored, as are her mechanisms for coping with grief and fear.

extraordinary people: the girl with a new face
21.00–22.00

Five’s acclaimed documentary strand comes to the end of another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme follows the incredible story of Marlie Casseus, a Haitian teenager who required pioneering surgery to remove a seven-kilo growth from her face.

In Port-au-Prince, Haiti, 13-year-old Marlie is dying. Because of a rare genetic condition known as fibrous dysplasia, Marlie’s bones are transforming into a huge growth, or lesion, that distorts her face, stretches her skin, crushes her windpipe and forces her eyes apart. “People here say that this is a curse, not a normal disease,” says Marlie’s mother, Maleine. “They say it is voodoo stuff.”

With time running out for their daughter, Marlie’s family contacted two US-based Haitian nurses, sisters Gina and Ginette Eugene, who called on an American charity for help. The International Kids Fund immediately arranged for Marlie to be airlifted to a Miami hospital, two hours away, where the world’s media was waiting for a press conference addressed by one of the few specialists who could save Marlie: Venezuelan-born maxillofacial surgeon Dr Jesús Gómez.

Marlie’s case of fibrous dysplasia is the most extreme in medical history: her seven-kilo lesion weighs more than her head and she has to support it with her hands. She is also in constant pain and in danger of going blind. Dr Gómez’s only hope of saving his young patient’s life is to remove the whole lesion in a pioneering, but lifethreatening operation, and insert synthetic bones. “Nobody has attempted to do a surgery that is this big in a patient this young,” Dr Gómez explains. The operation is costing $95,000 – money raised by the International Kids Fund.

At 7.30am on the day of the operation, the surgeons and family know that this will be the turning point in Marlie’s life. Dr Gómez is aware that the procedure could either change or end Marlie’s life – there are great risks from bleeding and infection. As the operation gets underway, Dr Gómez and the team remove huge parts of the mid-section of Marlie’s face and, incredibly, manage to reconstruct her nose. At the end of the 17-hour procedure, Marlie has 2,500 stitches in her face – but she can now hold her head up, and wants to see herself in a mirror for the first time in five years.

Six weeks later, Marlie is free from pain for the first time in years, and can even smile. Dr Gómez is confident that she will eventually look “pretty close to normal”, because he knows she will put in the necessary effort. “We gave her a new chance,” he says proudly. “We gave her hope.” However, Marlie’s ordeal is by no means over. She must now endure another operation to remove the lower part of the lesion and replace it with an artificial, titanium jaw. After the diseased parts are cut away, carefully avoiding damaging the delicate nerves of the mouth and tongue, the new jaw is screwed into place.

After a few weeks’ healing, Marlie is looking forward to being reunited with her father and sisters, who are coming over from Haiti to see her. “I lost Marlie, but now I have her back,” says her father, Michel. “Marlie was dying, but now she is dancing.” The family return to Haiti, where Marlie recieves VIP treatment from the community that had previously shunned her.

One year later, Marlie can pass unnoticed in a crowd. She still faces more reconstructive surgery, as well as physio and speech therapy, but her face has healed, she has gained weight and, after another operation, she can speak again. “Since everyone is so kind to me now, and my face looks nice,” she says, “I no longer feel like I want to die. Now I can have hope.”

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