Extraordinary People - Oldest Conjoined Twins

ExtraOrdinary People - Oldest Conjoined Twins

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 the story of Ronnie and Donnie Galyon who, at 57 years old, are the oldest conjoined twins in the world. The cameras follow the brothers as they attempt to fulfill a lifelong dream of watching their favorite American football team play.

For nearly six decades, Ronnie and Donnie Galyon have been locked together in the same body. Joined from the base of the sternum down to the pelvis, the twins’ everyday life is full of co-operation and compromise, since even the simplest of tasks can pose a challenge. But having spent their lives facing each other, Ronnie and Donnie get through each day thanks to a well-rehearsed and specially choreographed routine.

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They live on their own in Dayton, Ohio, but are heavily reliant on their younger brother Jim for help. “Jim has been a saint for Ronnie and Donnie,” explains Dr Glenn Kwiat, the family physician. “He’s their lifeline.” To ensure the twins live as normal a life as possible, Jim and his wife Mary regularly take them out for breakfast at a local diner. Here, Ronnie and Donnie are well known by the locals and can enjoy their food in peace. But with the twins’ health now declining, Jim wants to take them 800 miles away to help them fulfil a lifelong dream of watching the Dallas Cowboys play in Texas.

Despite sharing the same body, the twins have very different personalities. “They’re total opposites,” explains Jim. While Ronnie is happy-go-lucky, Donnie is more uptight, even stubborn, according to Jim. They both enjoy watching television, but do not like the same shows. Their disagreements often end in fights, but the pair would never dream of being separated. “We were born this way by God,” says Ronnie. “Let God separate us, not surgical knives.”

From the day they were born, the twins were bombarded with offers of work from fairs all over the USA. With nine children to support, their father, Wesley, made the difficult decision to take the twins on the road as a sideshow attraction. But Ronnie and Donnie loved life on the road. Their tours made them celebrities and brought them fame and fortune, with which they were able to support the rest of their family. “I’m proud of them for that,” says Jim.

In 1991, after three decades of work, the pair retired and moved into their first independent home. Despite being 39 at the time, the twins had never looked after themselves and needed a year of lessons from Jim to learn essential skills like cooking and housework. Over the last decade, however, the combination of weight gain and old age means that coping is becoming ever more difficult for the twins. “I think they feel somewhat trapped in that house,” says neighbour Scotty.

While they are still able to move, Jim is determined that his brothers will make it to their first football game. “This is a once in a lifetime thing,” he says. “They’re totally stoked.” When the time for the trip arrives, the twins are very excited. “Got up at 4 o’clock, had a shower and I’m ready to boogie!” says Donnie as he and his brother are helped into Jim’s specially adapted car.

Once away from their own neighbourhood, Ronnie and Donnie are attracting a lot of attention –but Jim is more worried about getting the twins onto the plane. However, he will not let a minor inconvenience like fitting onto the plane get in his way. “If all else fails, we’re driving to Dallas,” he says. Luckily, the airline crew have allowed the twins three seats in a row and they manage to make it safely to their destination. After an anxious wait to repair the special wheelchair that was damaged in transit, Jim, Mary, Ronnie and Donnie arrive at the stadium. But the brothers’ loyalty may yet be divided, with the twins supporting the Cowboys and Jim rooting for their opponents, the Bengal Tigers.

NOTE:
Ronnie and Donnie have mostly pleasant memories of life in the sideshow, but they enjoy the freedom of retired life and say they would not want to return to showbusiness. When asked about separation, the brothers reply in unison, "No Way!"

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Extraordinary People - The Girls with Too Much Skin

Extraordinary People - The Girls with Too Much Skin
First aired: 3/19/2008
Harlequin Ichthyosis is a very rare, incurable, genetic skin condition. In it, the skin grows far faster than normal. The whole body becomes completely encased in a very thickened, scaly suit of skin armour. The skin becomes very tight causing restriction of movement of the arms and legs and, particularly, the fingers and toes. The face is deformed, the eyelids are inverted, the ears are bound down, and the mouth is very tight.

Lucy Betts, at eighteen years old, is the oldest surviving harlequin ichthyosis sufferer in Britain. Her survival is down to a life-saving ritual of scrubbing, bathing and creaming to keep the skin growth under control. Correction: apparently Nusrit "Nelly" Shaheem, born 1984, is older.

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Harlequin ichthyosis only occurs when both parents carry the same defective gene, the chances of this are one in a million. However, the chance of these parents producing a harlequin child are 1 in 4. Despite these odds, the Betts chose to have a second child. Sadly they could not defy the odds and Hannah was born, also with harlequin ichthyosis but with the added complication that she also has cerebral palsy.

Overnight, Lucy and Hannah's bodies grow as much skin as a normal body would grow in 14 days. Every morning and every night they have to bathe for up to 2 hours. The top layers of excess skin have to be rubbed off and softened with skin cream to prevent it cracking and causing infection. This can be a very painful process which the girls have undergone since birth. Between them, Hannah and Lucy use one 12kg tub of skin cream every 5 days.

The condition has affected Lucy's sight leaving her blind in one eye with only 10% vision in the other. This has been caused by the flaking skin behind the eyelid which scratches the cornea.
For years, the Betts believed they were the only harlequin family in Britain, but when Lucy was ten, they found out to the contrary.

The Bowen family gave birth to Dana who has the harlequin skin condition, they too chose to ignore the odds and have a second child. Lara was born with the same dreadful skin condition.

Dr David Atherton a consultant paediatric dermatologist says: "Most children with harlequin ichthyosis die within a few days of birth. The first big problem they have is massive fluid loss. The main purpose of skin is to keep liquid in th body so many, in the past, died of renal failure in infancy."

Dana Bowen was unfortunate, the skin on her fingers and toes was extremely tight, early on, and interfered with the blood flow so she has lost the tips of several of her fingers. 8 years after their first meeting, the harlequin families come together again. There has been a medical breakthrough and for the first time the families have been given hope of a possible cure.

All four girls have been involved in a world-wide research project. Last year they supplied DNA samples for analysis, and now the results are due to be released. Scientists have managed to identify the harlequin gene and identified a defective protein in all of the girls. They believe a fat can be added to the skin cream they use to compensate for the defective protein and slow the skin growth.

They also revealed that both families share the same genetic mutation meaning that, in the distant past, they are related.

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Extraordinary People - The Boy Who Sees Without Eyes

Ben Underwood is blind. Both eyes were removed when he was just three years old, leaving him with no vision at all. So how on earth does he play basketball, rollerblade and cycle his bike? Ben lost his eyes to retinal cancer but, unbelievably, he's taught himself to see; with sound.

Ben Underwood and his family live in Sacramento, the state capital of California. It's an old city with roots in the Wild West, but Ben and his family live in the new, outlying suburbs.

Ben uses many common aids for the blind, like speaking software for his computer so he can jot down his rap lyrics. He's also written a book and does his schoolwork on a hi-tech Braille writer. But what's unusual, what's totally unique, is what he doesn't use. Ben has no guide dog and never uses a white cane. He doesn't even use his hands. Instead he sees with sound, he makes a sharp click, with his tongue, which bounces back off nearby objects. Amazingly, Ben's ears pick up the echoes and he can precisely locate where things are. Ben is the only person in the world who sees using nothing but echolocation.

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Ben's echolocation is so good, that at home his mum, Aquanetta Gordon, and his brother make no allowance for his blindness at all. Aquanetta has refused to allow the loss of Ben's eyes to overshadow their lives.

Ben was born perfectly healthy, with dark eyes like his mum. But, when he was two she looked into his eyes and saw something was terribly wrong. In Ben's eye was a rapidly-growing, malignant tumour; a retinoblastoma. This is a rare infant eye cancer that affects only one in every six million. Dr James Ruben, Ben's paediatric eye surgeon, explains "If left to it's own devices it would be lethal. It would spread along his optic nerve and into his brain".

In an attempt to save his sight, doctors immediately began intense chemo and radio therapy, but after ten months there was still some scattered tumour. Aquanetta had to make a critical, heart-rending decision; try to save his eyes or try to save his life.

To this day, Aquanetta describes the world to him so that Ben can experience life to the full. He is currently on his fourth set of prosthetic eyes and Aquanetta still treasures the ones he had as a little boy.

Just one year after the operation to remove his eyes, Ben astonished his mum when he performed what seemed like a miracle. While in the car he asked his mum what the big building was that they were passing. Ben's ears were picking up the sounds of the city traffic reflecting from the building's surfaces.

Seeing with sound transformed Ben's life. His mum let him play in the street because his sound pictures seemed to make him more aware of danger than his sighted friends. Ben's super-sense amazed everyone, but this was just the beginning. When he was seven, Ben discovered a new power, he began to click. Ben learned to bounce his clicks off objects around him, giving him an even clearer picture of his surroundings. Over the years Ben has developed his clicking into such a fine art, that he can skate freely. He has the confidence and fluidity of movement through space other blind people can only dream of.

There's nothing his friends can do, that Ben won't attempt, and conquer.

Doctors suspect that Ben has developed super-hearing to compensate for his loss of sight. However, tests reveal he has only normal hearing. So, has Ben's brain learned to translate the sound he hears into visual information?

Sonar uses echo location to detect underwater objects. In water, even a small noise can be heard for many miles. In air, echoes are much harder to detect. They're so faint it's a miracle Ben can echo locate at all.

Scientists at the University of California in Santa Barbara want to see and study how Ben navigates with such a faint signal. They test him to see how small an object he can detect and how well he can differentiate the shape of different objects. He excels by detecting a thin upright tube and correctly identifying two like objects from four placed on the table in front of him.

School hasn't always been a happy experience for Ben. Three years ago, Aquanetta was advised to send him to a residential school for the blind. She was told it would be good for Ben to mix with other blind kids. As soon as he arrived he knew it was a big mistake. He recalls "I didn't like the blind school because it was like a school full of handicapped kids. I don't belong here, there ain't nothin' wrong with me". Many of the students, as it turned out, had multiple disabilities. With so many vulnerable students around, staff were naturally protective, but Ben wanted to run around and play games, just as he did at home.

Ben is a typical teenager; he thinks he knows it all. Aquanetta knows there is only one man he might listen to. Daniel Kish is a unique mobility instructor; like Ben he lost his eyes to cancer as a baby, he also discovered clicking as a child. Unlike Ben he's perfected a mobility system that combines echolocation and the cane. He has Ben's no-limits philosophy too, taking students hiking and mountain biking. For Daniel, "The Blind Leading The Blind" is a campaigning vision.

Of Ben he says "In terms of echolocation he's probably one of the finest, if not the finest, I've ever come across. But he could achieve so much more if he would swallow his pride and learn to use the cane". Ben is the best self-taught echo locator in the world.

Daniel has experience of travelling quickly and safely all over the world; alone. Just the sort of independence he wants to teach Ben. A need he forcibly demonstrates when he let's Ben get completely lost on a walk in the local park.

NOTE:
There was a funeral today for Ben Underwood at Harvest Church in Elk Grove, not far from Sacramento. Unfortunately, the same cancer that made Underwood blind returned and spread to his brain and spinal chord. He passed away January 19, 2009 at the age of 16. Since today would have been Underwood's 17th birthday, Stevie Wonder sang 'Happy Birthday' at the service, which was attended by more than a thousand people. Wonder and Underwood had met at a conference on vision and technology.

There's a page about human echolocation on Ben's website.
http://www.benunderwood.com/echolocation.html


This Special ability was given By The Creator Himself See: Exodus 4:11

"And the LORD said unto him, Who hath made man's mouth? or who maketh the dumb, or deaf, or the seeing, or the blind? have not I the LORD?"

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Extraordinary People - The Girl Who Makes Miracles

The Girl Who Makes Miracles

At the age of 3 Audrey Marie Santo fell into the family swimming pool and, following doctors botched attempts to revive her, fell into a coma-like state referred to as ‘akinetic mutism’. Audrey had been brought up a Catholic and in her bedroom there are numerous icons and statues of the saints and the Virgin. On her return from hospital the statues began to weep and the stigmata appeared on her body.

Seventeen years after her accident, Audrey is still in a coma, still stigmatic, and the statues continue to weep. On the last Monday of each month from 1 to 4pm a select group of fifty or so terminally ill people are led away from a larger crowd of pilgrims to cluster around Audrey. They have come because they believe that she is a real stigmatic, that she displays a regular and spontaneous manifestation of bloody wounds which imitate the five crucifixion wounds of Christ. They have heard that blood seeps from Audrey’s wounds and then stops, with the wounds healing and disappearing.

They have also heard that the statues of Christ surrounding her weep oil; that traces of human blood have been discovered in communion wine and the Tabernacle; and that churchmen have witnessed the holy bread bleeding.

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THE REAL STORY:
Worcester, Massachusetts

Every month, thousands of people come, from all over the world, to this ordinary suburban house in the middle of America, in search of a miracle. They have heard stories of statues in the house weeping oil and bleeding real human blood. They believe these are signs of a powerful religious presence. They have been told that this is a place where people come to be cured of cancers and other life-threatening illnesses and that the provider of these miracles is a modern-day faith healer and one of the most vivid embodiments of God in recent memory.

Indeed, there have been some 150 case of miracle healings in the last 19 years, as well as thousand more that are unconfirmed. The extraordinary thing is that all of these people believe that the cure they are seeking rests in the hands of a young woman who has been in a coma for nineteen years. This is Audrey Marie Santo and many believe that a brief five minute blessing in her presence can offer them the miracle cure that conventional medicine is unable to provide.

On the 9th of August 1987, Linda Santo's three year old daughter was playing in the back yard of their home in Worcester, Massachusetts. Just after 3PM, Linda discovered Audrey unconscious in the swimming pool. The little girl was rushed to hospital, but fell into a deep coma and never regained consciousness.

Audrey was diagnosed with akinetic mutism. Her body functions enough to keep her alive but she doesn't respond to any external stimuli and her brain is irreversibly damaged. The doctors recommended that she should be interned in a nursing home, where she wasn't expected to live for more than a few weeks. Despite the seriousness of the situation, Linda devotes het life to caring for Audrey herself, and returned to the family home.

Sustained by her Catholic faith, she searched for other, less scientific, answers to her daughter's critical illness. A search which took her 4,000 miles away to the religious shrine of Medjugorje where she hoped she would find a miracle cure for Audrey.

The trip would turn out to be a defining moment for both Linda and her daughter, for it was at the shrine of Medjugorje that Audrey is believed to have received a message from the Virgin Mary. Apparently, Audrey became animated, she began moving, she appeared to be trying to speak, but the moment passed.

This bizarre incident would, seemingly, provide the catalyst for a series of remarkable events. Linda believes that her daughters improvement and subsequent heart attack was a sign from God. A choice of her own life or a life helping others. She chose to become, what the Catholic Church refer to as, a victim soul. So marked the beginning of a story that would see Audrey Marie Santo become one of the most famous miracle workers in the world.

Dr John W. Harding, the family physician, observed "It is very special that she is now 21 years old. She has gone 18 years without a bedsore, She has health problems, being on a ventilator most of the time and having to receive G-tube feeding. She can't swallow her own saliva so relies on continuous suction. She has developed diabetes and has severe scoliosis which has compressed one lung. With all of this, it's a bit of a miracle she is here at all".

Her cause of death was cardio-respiratory failure. A vigil and funeral mass were held at Saint Paul's Cathedral but her family requested that her burial remain private.

NOTE:
Remember what Jesus Christ said when he was on earth. "For there shall arise false Christs, and false prophets, and shall shew great signs and wonders; insomuch that, if it were possible, they shall deceive the very elect." ~ Matthew 24:24

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Extraordinary People - Robochick The Bionic Boy

First aired: 7/2/2008

Extraordinary People explores the life of Cheri Robertson, who was fitted with a prototype electronic vision system 15 years after losing her sight an automobile accident. However, Jens Naumann, the first patient to undergo the prototype surgery, considers having his defective system removed, Cheri begins to have problems with her system too. The documentary also looks at Evan Reynolds, who has the world's most advanced bionic hand.

Cheri Robertson is totally blind. She lost her eyes in a tragic accident when she was just nineteen years old and for the next two decades she lived in complete darkness. Cheri though she would be blind for life, but in 2004 something extraordinary happened.

Cheri is a guinea pig in an extraordinary experiment that has transformed this ordinary mid-western girl into one of the world's first cyborgs. Her brain has been implanted with a ground-breaking artificial vision system.

It is a procedure so radical that its still unapproved by the US Government but, despite this, Cheri was willing to go under the knife to prove that bionic vision can restore sight to the blind. Cheri is just one example of how the science-fiction dream of bionics is becoming real.

In the UK, patients are being fitted with with the first fully functional bionic hand. Eighteen year old Evan Reynolds lost his arm in a car accident last year, now he's on the way to becoming a real-life bionic boy. Cheri and Evan are both at the forefront of bionics. They are human experiments that give us a glimpse of what the future of medicine has in store.

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The FULL Story:

Cheri doesn't call herself the bionic woman, she calls herself the Robochick. Cheri lives with her mother Suzi in St Louis, Missouri. Cheri has been blind since 1989 and Suzi takes care of her full-time but, she never dreamed that this would include learning to plug an artificial vision system into her daughter's head.

Growing up through high school in the 80s, Cheri was a popular girl who had no trouble fitting in. She was a dancer and did acrobatics. In the autumn of 1989, Cheri had just started college and had her whole life ahead of her. The accident happened when Cheri and her boyfriend were driving to relatives for Thanksgiving. They had a head-on collision with a truck, the impact threw her forward and she smashed her head on the gearshift. Cheri's injuries were so severe it was a miracle she made it to hospital alive.

Her neurosurgeon Dr Kenneth Smith explains "She received severe injuries to her upper face and the front part of her brain. Both eyeballs were so badly damaged that they had to be removed". Against all the odds, the surgeons were able to save her life.

As nineteen year old Cheri recovered from the accident, her doctors were worried, not only about her physical injuries but , by the psychological trauma that came with losing her sight.

The artificial vision system was the brain-child of a pioneering scientist named William Dobelle. Dobelle was a maverick operating on the fringes of the medical establishment. His extraordinary idea was to create artificial vision by simply plugging a video camera directly into the brain of a blind person. To prove that bionic vision would work, Dobelle needed to experiment on human guinea pigs. But, getting government approval for such extreme surgery would take years. So, rather than wait, Dobelle advertised for volunteers and began his own trials in Portugal.

Cheri's Aunt read about Dobelle's vision implant in the newspaper. Dobelle needed volunteers who had been born with perfect vision, but later lost it. So, Cheri was ideal and she volunteered for surgery in 2003. The operation would be painful, expensive and there was no guarantee that it would work.

Cheri flew to Portugal in October of 2004. The day before the operation she got a shock when doctors explained exactly what it would involve. Basically, it was a simple craniotomy to open the skull and expose the occipital lobe where electrodes would be placed. When the skull is replaced it would have two holes drilled to take the electrode connectors.

Despite her reservations, the operation went ahead and took more than four hours. First the back of Cheri's scalp was peeled away, then the surgeons cut a section out of her skull to expose her brain. Next, two plates, each containing hundreds of electrodes, was inserted in the folds of her brain right on the visual cortex. Two large holes were drilled through the back of Cheri's shull to allow the terminals to be implanted. Another metal plate was fitted to the top of her head to ground the electricity running through the system. Finally, her head was stitched back together.

There was a problem, one of the terminals continues to leak brain fluid and more operations were needed to fix it. The skull is trying to heal around a foreign body which it naturally rejects and Cheri's head took several months to heal. Cheri thought the scientists would hook up the cables to her head, flip a switch and boom, she would see. In fact, the scientists didn't know if the implant would work at all. They had to test each of the electrodes individually to find out which ones were live.

A camera, fitted to Cheri's glasses, acts as an artificial eye. It sends a signal to a computer around Cheri's waist. This computer translates the signal into impulses which are sent through cables to the electrodes in her brain.

Finally, during the testing, Cherie saw a flash of light "It was kind of like I was in a dark room and someone shone a flashlight in my face". After several weeks of tests, Cheri was was ready to bring the system home. Cheri is currently using only ten of a possible 484 electrodes on her visual cortex. She is able to see contrasts but, is not using her bionic vision to anything like its full potential.

The promise of a bright new technological future was about to turn sour. Bill Dobelle died suddenly in 2006 at the age of 59. Unfortunately, with him died Cheri's hopes. With the head researcher gone funding for the Dobelle Institute was withdrawn. Cheri may never receive the system upgrade that she had been promised to extend the visual system's capabilities. To compound the problem, the system she currently has, has failed.

Jens Naumann was one of the first artificial vision patients and his system did, after many teething problems, work fully. Cheri hopes he can explain what she might expect. What she doesn't know, is that his system has completely broken down and he is thinking of having the implants removed. While Jens has given up on his artificial vision system, he still thinks Cheri's has enormous potential and that through her the dream of true bionic vision may, one day, be realised.

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