Extra Ordinary People - Half Man Half Tree (HDTV)

Season 6, Episode 15

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.

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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?

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UPDATES: 2009

Dr Gaspari, of the University of Maryland, concluded Dede's affliction was caused by the Human Papilloma Virus (HPV), a fairly common infection usually causing only small warts.

Dede's problem was that he has an extremely rare immune system deficiency, leaving his body unable to contain the warts. The virus was therefore able to "hijack the cellular machinery of his skin cells", ordering them to produce massive amounts of the substance causing tree-like growths known as "cutaneous horns".

After clearing up a dispute about authorization with the Indonesian government, Dr Gaspari returned to Indonesia and is now liaising with the doctors caring for Dede at the Hasan Sadikin Hospital in Bandung, West Java. Dede went under the knife for his first operation in January. In the most recent operation, in March, doctors removed growths on his feet. The medics are now trying to ensure that the warts don't grow back.

Dede is taking vitamin A tablets to boost his immune system, and Dr Gaspari is hoping to get expensive anti-viral medicine available only in the US.

His father Ateng, 72, said: "You can see the form of his 10 toes now. He can wear flip flops. He loves doing sudokus. He is in good condition." Ateng added: "The first priority is to get cured and get a job, but as a father, of course I want my son to remarry. He is a normal guy and he is still a young man."

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ExtraordinaryPeople - The Boy With A Tumour On His Face

Season 4, Episode 9 RunTime: 47:39

Extraordinary People presents an update on the Indonesian boy named Novemthree, who underwent radical surgery in Taiwan to remove a huge, facial tumor. One year later, his tumors have grown and now his life is once again in danger from suffocation and starvation.

This astonishing film follows up on the case of Novemthree, the boy whose face was almost completely obscured by colossal tumours by the age of two. He is settling back into a life after groundbreaking surgery and beginning to regain both physical and emotional confidence, but a year on, the tumours are growing again. More surgery might kill him, but leaving the tumours unchecked is a fatal decision. Novemthree’s life hangs in the balance.

Back in November 2004, Five showed an inspiring documentary telling the story of five-year-old Novemthree, an Indonesian boy with a rare genetic disorder called Gigantiform Cementoma. The condition manifested itself in the largest facial tumours in recorded medical history. Doctors on the Indonesian Batam Island had neither the skill nor the facilities to treat him, and coming from a poor family it seemed unlikely that they would seek outside help. The boy was shunned by the frightened villagers who were totally unfamiliar with the condition. Help came in the form of Dr. David Lui, a Buddhist missionary who agreed to send Novemthree to a specialist unit in Taiwan. Novemthree arrived at the Buddhist Tzu Chi hospital in Hualien, Taiwan, in the spring of 2004, where he presented doctors with their greatest ever challenge. His illness had caused the tissue in his teeth to mutate into giant tumours and had destroyed most of the bones in his face. In a series of painstaking operations, most of the tumour was removed. Just enough of Novemthree’s face was left behind, which the doctors shaped into a new face and miraculously, his sight was restored. Doctors hoped that minor operations every few years would keep the tumour at bay.

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This film comes back to Novemthree’s story a year on, when sudden deterioration has thrown the long term schedule into disarray. Surgeon Dr Chen is shocked to see how much of his work has been lost. Novemthree is having difficulty breathing and eating and he must return to Hualien with his mother, Mindo.

When Novemthree and Mindo arrive at Hualien the doctors are impressed at his energy and mobility but cannot ignore the startling developments in his condition. A CT scan reveals that the tumour is re-growing at an astonishing rate in every section of his face, stunting his breathing and his vision. More major surgery is the only way to save Novemthree’s eyesight and save him from suffocation.

This is a turning point in Novemthree’s treatment. It has become clear that the tumour is more aggressive than anyone had imagined, and if Novemthree is to survive, he must resign himself to a lifetime in and out of surgery. “I feel sad and disappointed,” says Mindo, “because it means that my son will not be cured.”

It is down to Mindo and Siahaan, Novemthree’s father, to decide whether or not to let the doctors operate. To do so would mean a life of continual and painful treatment for Novemthtree, far away from home; to refuse might mean putting his life on the line. News of Novemthree’s condition reaches David Liu, the kindred spirit who discovered Novemthree in 2004; he rushes to Taiwan to be with him and Mindo. He empathises with the agonising dilemma Mindo and Siahaan face and he tries to help them with their heartbreaking choice. Finally, they decide to give the surgeons the go-ahead.

Concerns over Novemthree’s breathing during the procedure mean that a tracheotomy – a permanent breathing hole – needs to be cut into his throat. A tracheotomy would affect him for the rest of his life, as it would need to be carefully monitored, but without it the operation itself would be more risky. In the prevailing uncertainty, the operation is cancelled in the hopes that a solution can be found in the coming months.

Two months after Novemthree returns home, he passes away in the night. The doctors had given him the gift of normal life, albeit briefly: he was nearly seven. “Novemthree was a kind, wise and clever kid,” says Siahaan. “Whenever he was feeling ill, he never once complained to us. He simply took all his suffering on his own.”

NOTE:
Contains scenes of surgery some viewers may find disturbing.

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Extraordinary People - The Twins Who Share A Body

The Twins Who Share A Body. Named Abigail and Brittany Hensel. 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?

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