Wednesday, October 21, 2009

Extraordinary People - The Couple With 27 Children

Extraordinary People - The Couple With 27 Children

This is the story of Jeanette Murphy, Supermum. The 53 year-old from Atlanta, Georgia is a full-time carer who has adopted 23 children with special needs on top of her own four birth children. Remarkably, the family of twenty-nine all live under one roof.

Jeanette and her husband claim they felt a calling to help children with special needs. Jeanette first became interested in mental disability in her teens when she became friends with a Down’s Syndrome boy who lived on her road. The experience inspired her to work as a counsellor in a home for disabled adults, and it was there that she met her husband, John, a nurse. John shared her dream of bringing children into their family and providing them with a safe and loving home. “We found that the people we were looking after had already been raised and had picked up bad habits that we couldn't change. We wanted to reach out to them when they were younger,” says Jeanette.

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In 1983, when they already had two biological children of their own, the Murphys adopted Shannon. 5-year-old Shannon was severely brain-damaged and hyperactive; she was extremely demanding and needed constant care. Nevertheless John and Jeanette felt encouraged to take on more children, including sweet-natured “family favourite”, baby Jonathan, who had Down’s Syndrome and had been wrongly diagnosed as blind. After that, the church adoption services contacted them every year with details of another child, and the Murphy family grew steadily. Adoption centres soon started referring parents who were reluctant to abort but unable to cope with disabled babies to the couple.

In the film, John and Jeanette’s birth children are asked how they felt about the idea of the ever-expanding family. Not that they had much choice; the Murphy children had to accept each adopted child in order to fulfil their parents’ dreams. “I never felt neglected,” says Shaun, the oldest of the children. “I never felt they weren’t paying enough attention to the biological children... It was like a team effort.” The children contribute to everyday life in the home, which the Murphys hope will aid in the development of their social skills.

Looking after such a huge family is obviously no mean feat. The monthly food bill is around £9000 and it’s a 24/7 job. The extended family has to manage on community donations and disability payments. Their house is cramped, with bunk beds housing up to four children per room. But the Murphys’ unwavering life ethic has enabled them to develop a unique approach to caring for the mentally disabled. They are convinced that a loving family home is the best possible environment in which to nurture the potential of these children, many of whom have physical as well as mental disabilities. They consider it vital to teach the children real life skills rather than “pampering and babying.” One of their daughters, Angel, is blind and has a prosthetic leg, but she is in charge of bath time and helps to care for the other children. She was a frightened child when she arrived, but “now she’s fearless,” Jeanette proudly explains. “Our goal is for the kids to eventually get jobs and marry. If we ever have enough money we want to build a second house for the older kids, where they can live semi-independently.”

But it’s not all sunshine and rainbows at the Murphy’s house. Behind the family’s daily life, concern over the children’s health always lurks. Down’s Syndrome is accompanied by heart defects, and most of the children were born with life-threatening conditions. The Murphys had a big scare when little Emily’s pacemaker stopped working. “Once you experience something like this, you know that bad things can happen,” says Jeanette. In 1990, baby Jonathan was diagnosed with leukaemia; he endured three years of chemotherapy and painful surgery before he died. “When you lose a child, it feels like you’ve lost a part of you,” says Jeanette. “I've sat through 14 heart surgeries for 13 kids panicking every time a doctor rushed down the hall. Five of our children have died – three as babies – and my world fell apart every time. They were all so precious.”

Not everybody approves of the Murphys’ methods, and some are determined to bring them down. “A lot of people think it’s impossible, so we must be doing something wrong,” explains Jeanette. When their son Cody’s biological mother handed him over as a baby, his grandparents decided that they wanted custody themselves. The ensuing legal battle and accompanying media circus put the Murphys in the spotlight, but the Court of Appeal ruled in their favour.

Some of the children, such as 20-year-old Amy, who has a part-time clerical job, may gain a degree of independence. Others will need more care as they get older, and some have declined dramatically. John and Jeanette won’t be around to supervise them forever, but for now, the Murphys put their faith in God and take it one day at a time.

Jeanette is optimistic about the future of her clan. “I am happiest when I see them helping one another, like the other day when Mia, who is ten, fell down and scraped her knee. Cody and Nathan, who are 14 and ten, brought her inside for a plaster. I see how much love they have every day.”
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Extraordinary People - The Tiniest Boy in Britain

Extraordinary People - The Tiniest Boy in Britain - EP17

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.

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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 tomeet 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.”

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Wednesday, October 7, 2009

Extraordinary People - The Man With Someone Else's Face

Extraordinary People - The Man With Someone Else's Face
Aired: Wednesday April 22, 2009

The documentary strand exploring remarkable tales of human experience continues. This edition follows a leading Chinese surgeon as he performs a partial face transplant on a man mauled by a bear. Meanwhile, a burns victim hopes that the successful outcome of this case will pave the way for his own full face transplant.

In 2005, doctors in France made international headlines when they performed the first-ever face transplant. Six months later, surgeons in China surprised the world with the news that they had performed their own facial transplant. This film follows the tale of this pioneering treatment and the prospects it holds for other patients.

At the Xijing military hospital in Xian, Dr Guo Shuzhong has become accustomed to treating patients with horrific injuries. “Some patients are so badly disfigured, they don’t look like human beings anymore,” he says. News of the face transplant in France is of especial interest to Dr Guo, who wants to make his hospital, and his country, a world leader in this extreme new form of surgery.
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A candidate for the first Chinese face transplant appears in early 2006. Word reaches Dr. Guo of a tribesman in the remote Yunnan province who suffered horrific injuries after being mauled by a black bear.

After studying photos of the patient, Li Guoxing, Dr. Guo invites him to the hospital – a gruelling, four-day journey over 1,500 miles. Li does not speak Mandarin Chinese and is unused to the big city. Accompanied by his nephew, who acts as translator, he undergoes his first medical exam. Dr Guo finds that Li’s face has been utterly destroyed by the bear – his nose has gone, his cheekbone is broken and there is a gaping wound in his cheek, revealing the tissue below. “His condition is critical,” says the plastic surgeon. “It’s going to be very difficult.”

Before surgery can begin, doctors must find a donor face that matches the age and shape of Li’s own. The face is eventually provided by a road-accident victim. Now surgeons begin a mammoth 18-hour operation to remove the face and stitch it onto Li’s head. The surgery is particularly complicated because bone from the donor must be attached to recreate Li’s nose, and each blood vessel must be sown under a microscope. However, the initial results are good. “When I looked in the mirror, I was very happy. It was like a dream,” says Li.

A face transplant requires a lifetime of follow-up treatment. To stop his body rejecting the donor skin, Li must take drugs to suppress his immune system. He faces three threats in the form of infection, metabolism changes and an increased risk of cancer. But after 18 months in hospital, a homesick Li checks himself out against medical advice and returns home.

Li is now so far away from modern medical facilities that he runs the risk of complications with his surgery. Dr Guo soon learns that Li’s skin is rejecting the transplant. He travels to Yunnan to confront his patient and discovers that Li has stopped taking his drugs because he was feeling better. Despite Guo’s entreaties to move to the city full-time, where doctors can keep an eye on him, Li insists on staying in his mountainside village. The outcome of the pioneering surgery now hangs on Li’s promise to resume his medication. “I feel frustrated,” says Guo. “I spent more time looking after that patient than I did my own family.”

If Li’s transplant fails, it could have serious consequences for other patients hoping to undergo the procedure. Among them is petrochemical plant worker He, who sustained appalling burns whilst saving his colleagues from a gas leak. His act of heroism left him totally disfigured and he has been shunned by society. Surgery is his only hope of returning to a normal life. “This is my second chance at life,” he says. He has already moved closer to the hospital and is prepared to follow the doctors’ instructions. But will his dreams be realized?

NOTE:
Li died later 2008. He don't wanna live in the city (because he is not used to it).

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Extraordinary People - The Worlds Heaviest Man Gets Married

Episode 16 - Extraordinary People - The Worlds Heaviest Man Gets Married
Runtime - 45min

When he first came to the attention of the media, 43-year-old Manuel Uribe was a desperate man. Weighing over half a ton, the monumental Mexican had been confined to his bed for some years and was severely depressed. In the depths of despair, Manuel turned to a local journalist and appealed to the world for help. Floods of offers came in from surgeons and dieticians, and Manuel was soon on a strict regime of exercise and dieting. Two years later, Manuel had lost a massive 180kg. Perhaps more remarkable than his weight loss, however, is the fact that he had managed to find love.

Manuel met his fiancĂ©e, Claudia, four years ago. What is most surprising about Claudia’s decision to marry Manuel is the fact that she has been in this position before. Her first husband weighed 220kg and dropped dead just six years ago as a direct result of his bulk.

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With the media circus in regular attendance at Manuel’s house, the quiet wedding ceremony he and Claudia had planned is no longer an option. Manuel’s huge size also means that his marriage will be somewhat unconventional. Still unable to walk, Manuel will travel to the venue and exchange vows without leaving the relative comfort of his reinforced bed

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MONTERREY, Mexico--Manuel Uribe, who once weighed 1,235 punds, has lost more than 500 pounds, thanks to an international team of doctors led by Dr. Barry Sears, creator of the Zone Diet. setting a new world record for the most weight lost.

He weighed 717 pounds (324 kg) in May after losing 518 pounds (235 kg) since March 2006 on a diet of grapefruits, egg-white omelets, fish, chicken and vegetables. Uribe has also added a new goal to his weight-loss plans – he wants to be able to stand up for his wedding in the coming year.

His wish is simple – to be able to stand on his own when he marries girlfriend Claudia Solis. He said: “It frustrates me a little, because it is not easy to get out. We are in love, and this year my birthday wish is to be able to stand when we get married,”

Its been four years since the couple met four years ago and now they have been together for the last two years.

“We are a couple. We have sex, and in the eyes of God we are already married,” said Uribe. In fact, his ladylove, Solis said that life with a big man was not a cakewalk all through. “I bathe him every day, and we get along very well. At times, yes, people say things … that it’s a fake relationship, but what we have is real,” she said.

Claudia said her family initially opposed the match because Claudia's first husband, who was also obese, died of respiratory failure. "They were worried about me being involved with another fat man, because they thought another husband would die on me," she said.

Uribe spent the 1990s eating pizzas and burgers in the United States where he worked as a computer repairman. Addicted to junk food, he eventually tipped the scales at 1,235 pounds (560 kg) back in Mexico, bingeing on greasy tacos.

His bulk made him the world's heaviest man.

A former auto parts dealer who has been confined to his steel-reinforced bed for more than six years, Uribe blames his condition on too much junk food and a botched liposuction that damaged his lymph nodes and left him with 200-pound tumors on his legs.

Uribe is still unable to move his swollen legs and his dream is to walk again and visit the mountainous countryside around Monterrey.

Until then, Uribe wants to share his story with others in the hope it will serve as a warning about diet, junk food and the need for moderation in all things.

About two years ago, a team of doctors stepped in to help Manuel change his eating habits and tackle his extreme obesity. Today he says he eats small portions of food five times a day, including chicken, ham, egg-white omelettes, fruit and vegetables. While sitting in bed, he exercises his arms with pull-ups and by pedalling with his hands.

Hoping his struggle will inspire others, Manuel plans to launch the Manuel Uribe Foundation this year to educate people about nutrition and how to combat obesity.

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Extraordinary People - Freak Show Family

Extraordinary People - Freak Show Family
Aired: April 01, 2009

The Film is about a group of Indonesians whose shocking medical conditions made them the star attraction in a travelling freak show. With the show now disbanded, the performers have returned to their villages, where they face the prospect of finding work outside the circus. The programme follows British surgeon David Koppel as he visits Indonesia in a bid to help combat their diseases.

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The documentary strand exploring remarkable tales of human experience continues. This edition features a group of Indonesian circus performers whose shocking medical conditions made them the star attraction in a travelling freak show. With the show now disbanded, the performers have returned to their respective villages where they face the prospect of finding work outside the circus. ‘Extraordinary People’ follows a British surgeon as he travels to Indonesia to see if he can help the people combat their conditions.

In Indonesia, a close-knit group of circus performers known as ‘the Clan’ has long been the main attraction at a travelling freak show. Esih, Sahi, Sakim and Mamat all have extreme physical conditions that have never been diagnosed, but the performers have managed to earn a living thanks to the morbid fascination of the public. However, the circus has now gone out of business and the four performers have been forced to leave life on the road and return to their villages. Sahi is trying his luck at woodcutting, but says the work irritates his skin, which is covered in bubble-like tumours. “At least I never went hungry when I was part of the freak show,” he says. Esih, meanwhile, is unable to work at all because of an enormous growth on her face. “I have no life,” she says.

Having heard news of the Clan’s plight, British craniomaxillofacial surgeon David Koppel is keen to help. So far, all he has seen of the Clan is a video of their act. “The whole thing is distasteful,” he says. “It’s exploitation of their appearance.” Mr Koppel hopes that by flying to Indonesia, he might offer the group members diagnoses, and provide them with treatment that could turn their lives around.

Before Koppel arrives in Bandung, the four performers meet at Esih’s house. It is the first time the friends have seen each other in many months, and it is an emotional reunion. In fact, the situation proves too much for Esih, so Sahi, Sakim and Mamat head to a nearby hostel for the night. The next day, Mr. Koppel is on his way to Bandung when he receives some worrying news. Esih has collapsed and must be taken to a local hospital for treatment, meaning she will not have the benefit of Mr. Koppel’s expertise this time around.

Once he has met up with the remaining three, Mr. Koppel sets about examining his patients and has soon come up with some diagnoses. Sahi and Sakim are both suffering from neurofibromatosis (Nf) – a genetic disorder that leads to the development of soft, fatty tumours on nerve tissue all over the body. Sakim’s tumours are mainly on the face, where one particularly large one has rendered his nose saggy and trunk-like. Sahi’s tumours exist all over his body. “It is not possible to remove all of these lumps,” says Mr. Koppel, “but it is possible to remove several of them.” Mamat’s dry, scaly skin condition is outside Mr. Koppel’s area of expertise, so the doctor takes his patients to Jakarta to enlist further medical help.

After meeting with dermatologists and surgeons at Jakarta’s teaching hospital, Mr Koppel gets his patients an appointment with the experts for the following day. “That’s a good result for the people involved,” he says. Delighted with the support the local doctors have offered, Mr Koppel visits the Clan members at their hotel to deliver the good news. Sakim is uncomfortable with the prospect of being examined by the doctors, but agrees to join the others. Mamat, on the other hand, wants to go immediately. “The sooner we go, the sooner we get some understanding of our conditions,” he says.

At the hospital, consultant dermatologist Eddie Carter recognises Mamat’s skin condition and is able to prescribe medication that will relieve his symptoms. After seeing the local surgeons, Sahi is booked in for a treatment to remove the worst of his tumours. In just six week’s time, Sahi will return to Jakarta to undergo an operation that could change his life. However, Sakim’s doubts get the better of him and he decides to return home to consult his family before going ahead with any treatment. “I think it’s a step in the right direction,” concludes Mr Koppel. Unfortunately, Mr. Koppel’s visit came too late to help Esih, who died of undiagnosed breast cancer in January.

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