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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