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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Extraordinary People - The Musical Genius

The Musical Genius - Season 5, Episode 2

26-year-old Derek Paraviccini is completely blind and partly autistic; he can’t tell left from right or count to ten. Derek now lives in a RNIB home for the blind but despite his profound disabilities, his brain is a perfectly programmed musical computer.

Derek was born three and a half months premature. His twin sister didn’t make it, and Derek technically died three times in the hospital. Miraculously, the tiny baby pulled through but his eyesight was destroyed by an oxygen overdose; as a result, he developed an astonishingly acute sense of hearing. Autistic people are often attracted to patterns and repetition, which can lead to some of them developing great gifts in fields such as mathematics or music. “When areas of the brain aren’t being used for their normal function, they are recruited for other functions,” says autism expert Dr Simon Baron-Cohen. With no visual cues to distract him and little emotional or intellectual recognition, Derek’s mind is free to concentrate almost entirely on music. He lives in a world of sound.

The Paraviccinis were astonished when, at the age of two, Derek started playing the piano. When they took him to school for the blind, little Derek heard a piano in the hallway and lunged for it. He broke away from his parents, pushed the poor child who was having a lesson off the stool and began playing with frightening vigour – with his fingers, with his elbows, with karate chops and occasionally with his nose. A musical prodigy was born, but to this day experts are baffled as to how Derek’s genius can coexist with such severe disability.

The RNIB’s Dr Adam Ockelford took Derek under his wing and became his mentor; he is one of the few people Derek trusts implicitly. We see Adam accompany Derek as he travels to the University of Sheffield, translating the pitch of a train engine into notes as he travels. At the University, a group of sceptical music scholars test his musical brain by playing him a Basque lullaby which he has never heard before. Of course, Derek amazes his audience by instantly playing the whole song perfectly; Derek remembers every single piece of music he’s ever heard. He is a true savant.

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Derek has the rare gift of universal perfect pitch, but the experts want to know exactly how many notes his brain can process. He is presented with a sequence of chords he has never heard before, played by an orchestra of 50 instruments; he still manages to repeat the sound by arpeggiating the chords.

Next, Derek is taken to Goldsmiths college where Professor Linda Pring fixes 32 electrodes to his skull in order to test how accurately and quickly his brain monitors sound. She plays him 64 musical phrases from Moonlight Sonata, half of which contain errors. His verbal responses are random, but his brain activity filters the wrong sounds with startling accuracy.

There’s no doubt that Derek has a gift, but can it really be called talent? Is he playing the piano with feeling or is he just a musical machine? Professor John Sloboda wants to measure Derek’s capacity for discerning emotion in music. When instructed, he can play a song in a happy or sad mood, but struggles when asked to play angrily; he merely growls over his playing. However, Jools Holland argues that the only way to judge is to listen to what Derek creates and the way he communicates to his audience. Derek is an exceptional musician because music is an extension of himself; he has an intuitive bond with the musical world.

Derek heads to Las Vegas. Here, he meets another musical savants named Rex Lewis-Clack, with whom he will duet in front of the biggest audience of his life. Will Derek rise to the challenge – and can he help the less experienced boy to play the concert of his life.

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