Girl With Rare Chromosome Condition Dubbed 'Bionic' As She Rarely Sleeps Or Eats And Doesn't Feel Pain | HuffPost Life

Meet The 'Bionic' Girl Who Rarely Sleeps Or Eats And Doesn't Feel Pain

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Doctors have called a seven-year-old girl with a rare disorder the "bionic girl" because she doesn't feel pain and never feels tired or hungry.

Olivia Farnsworth has a rare chromosome condition - a chromosome 6 deletion - that has left medics and her family stunned.

Olivia's mum, Niki Trepak, 32, said: "Doctors have called her the bionic girl, she's made of steel. She's got no sense of danger.

"She got run over and dragged down the street by a car and she didn't complain. "

Mum Niki Trepak says her daughter has "no sense of danger"

"She was dragged about ten car lengths down the road. It was horrendous, I don't think it's something I will ever get over," the mum-of-five, from Huddersfield, West Yorkshire, continued.

"I was screaming and all my other children were screaming as she ran out.

"But Olivia was just like, 'What's going on?' She just got up and started walking back to me. The hospital said she's bionic.

"Because of the impact she should have had severe injuries. She had a tyre mark on her chest. But her only injuries were she had no skin on her toe or her hip.

"The doctors were busy giving her CT scans, x-rays, trying to find injuries but there was nothing. She was really lucky.

"The doctors think what saved her from injury was she didn't tense up."

The condition means Olivia also never feels hungry and can go three days and nights without sleep.

Consultant geneticists have told Trepak they have never come across the disorder before.

Niki Trepak with Olivia

Single mum Trepak said she knew Olivia was different to her other children from the very day she was born.

"I'd already had two children before Olivia arrived so I knew she wasn't the same," she said.

"She didn't sleep, but I put that down to her being a fussy baby. At about nine months old she stopped napping during the day.

"But as she got older, she never needed sleep. She survived on about two hours a night and was never tired.

"I'll always remember when she was five and started school, I saw her yawn for the first time. I was so excited, I'll never forget it. I thought to myself, finally she's tired.

"Finally, I'll be able to get some sleep, I thought. Because it wasn't her that suffered without sleep, she never needed it. It was just me who needed the sleep.

"After about two hours she would be up and out of her room. She'd make any excuse not to sleep - she didn't like the colour of her carpet, her curtains, her bedding.

"About six months ago she was put on medication to help her sleep. Now she gets about six hours a night."

Trepak says her daughter has bitten through her lip and "not even noticed"

Trepak continued: "She didn't feed, when she was nine months old she started rejecting my milk. I thought she didn't like it but since then, she's never liked food.

"She's almost become conditioned to eat, she eats at school because everyone else does but she doesn't really need it. She never gets hungry.

"At home she will go through phases of eating the same thing for months and months and then go off it - once it was milkshakes, once butter sandwiches, once chicken noodles.

"As a baby I always said she was made of steel as she never cried but I never thought she'd feel no pain, it was just a joke.

"I remember when she was at nursery, one day they rang me and told me she'd fallen and her bottom teeth had gone through her bottom lip.

"When I arrived to take her to hospital, she wasn't even crying.

"She had to have plastic surgery and when the surgeon was examining her, he was pulling her lip and she wasn't even flinching.

"He said to me, there's something not right about her."

Trepak said her daughter is prone to outbursts and violence

Trepak, also mum to Ella-Mae, 12, Bradlee, 10, Archie, six, and four-year-old Poppy, said: "She had bad colic and her hair didn't grow. She had no hair until she was about four-and-a-half. People called her a boy all the time."

Another struggle for Trepak is her daughter has been prone to occasional outbursts and violence.

But despite all this, Trepak said Olivia is a happy little girl.

She added: "She doesn't let any of this affect her - because for her, she's normal. She's never experienced pain, or hunger, or tiredness.

"But it was such a battle for us to find out what was causing her symptoms. The doctors had no idea what could be wrong with her.

"This is why I want to raise awareness of chromosome six problems.

"To look at Olivia you don't know anything's wrong with her. I want people to know and to stop judging."

Trepak and Olivia have been supported by chromosome disorder support group Unique.

Unique chief executive, Beverley Searle, said Olivia's disorder is the first they have come across in the entire world.

"This is a super rare case," she explained. "Olivia has a condition that's in the same group as people with '6p' deletion.

"On our worldwide database there are just 100 people with the '6p' deletion.

"That's out of 15,000 chromosome disorder cases worldwide - and there may not be anybody out there the same as Olivia.

"People feel isolated when they are diagnosed with rare disorders.

"I can't comment on this individual case or whether Olivia is 'bionic' - but we are here to help her and her family to alleviate symptoms.

"As a group we try and find matches and provide information for families, which can be great for friendship and local support."

The group states about one in 200 babies are born with a rare chromosome disorder but each one can be very different, making them exceptionally rare.

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This Is What It's Like When Your Kids Really Don't Sleep

7 Sleep Conditions

Sleep Paralysis(01 of07)

If you've ever drifted off to sleep or just woken up from sleep but were unable to move any part of your body -- spurring a sense that you are frozen in your bed -- you may have experienced sleep paralysis. Sleep paralysis is more common in the seconds to minutes when we're first waking up, whether in the morning or in the middle of the night, Gehrman said. When we are in REM sleep, our muscles are paralyzed so that we don't act out our dreams. But with sleep paralysis, a part of the brain wakes sooner than the rest, giving a sense of wakefulness and alertness -- even though the body's muscles are still paralyzed, Gehrman explained. However, sleep paralysis isn't dangerous despite the unsettling feeling experienced by people who have been through it, according to Stanford University. To decrease the number of sleep paralysis episodes you have, stress reduction, getting enough hours of sleep a night and making sure you have a good sleep schedule could help. (credit:alamy)

REM Sleep Behavior Disorder (02 of07)

Opposite to sleep paralysis, REM sleep behavior disorder occurs when your brain is in REM sleep but your muscles are acting out your dreams, Gehrman explained.WebMD explains the signs of the disorder:

Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing. An acute form may occur during withdrawal from alcohol or sedative-hypnotic drugs.

Stanford Sleep Disorders Clinic sleep specialist Tracy Kuo, Ph.D., told Everyday Health that this disorder could potentially be violent, especially if the person is kicking or punching his or her self or partner while sleeping. "Without treatment, it tends to get worse over time," she told Everyday Health. However, there are medications a person can take to help people relax their muscles when they sleep so that they don't have any muscle activity when they are in REM sleep, Everyday Health reported. REM Sleep Behavior Disorder has also been linked to neurodegenerative diseases like Parkinson's disease and multisystem atrophy, and seems to occur several years before these diseases, WebMD reported. (credit:alamy)

Sleep Walking And Talking (03 of07)

Similarly to sleep paralysis, sleep-walking and sleep-talking occur when part of the brain is awake but the rest of it is asleep, Gehrman said. "With sleep-walking, people are mostly asleep but you're engaging in what are usually kind of basic routine behaviors," Gehrman said. "So typically, people sleep walk and go to the bathroom, or go down to the kitchen and get something to eat, but it's all usually very routine." Because sleep-walking and sleep-talking occur in non-REM sleep, since non-REM sleep only produces bland, boring dreams, whatever the person is saying or acting out is not related to what they may actually be dreaming about, he said. However, Gehrman said that there is not yet a clear answer as to why we say or act out the things we do when we are sleep-walking or sleep-talking.Sleep-walking isn't inherently dangerous, but if a child is prone to sleepwalking, Honaker recommends that parents take safety precautions by locking windows, putting safety latches on doors, etc., so that sleep-walking children don't accidentally hurt themselves. (credit:alamy)

Bedwetting(04 of07)

Bedwetting, also known as enuresis, is defined as involuntary urination by a child who is older than age 5 or 6 (either in the day or night), according to the A.D.A.M. Medical Encyclopedia. Sarah Morsbach Honaker Ph.D., a pediatric sleep psychologist at the University of Louisville, told HuffPost that bedwetting is very common in children, and that most kids outgrow it as they get older, many times without any intervention.Honaker said a possible cause for bedwetting is maturational delay, meaning a child's body hasn't yet matured to maintain bladder control throughout the night."You wouldn't expect a 2-year-old to be dry throughout the night," Honaker told HuffPost. "For some kids, this ability matures later than others." In addition, some kids may just have a lower arousal threshold, meaning that it takes more to rouse them from sleep if their bladder is full, she said. "Because enuresis is outgrown, there's a tendency in some cases for healthcare providers to make the decision not to treat it," Honaker said. "However, there has been research to suggest it impacts self esteem and can have social consequences." Because of that, she suggests that kids whose lives are strongly impacted by bedwetting to consider an intervention like a bedwetting alarm, which senses moisture and goes off so the child wakes up to go to the bathroom. (credit:alamy)

Night Terrors (05 of07)

Night terrors, also known as sleep terrors, occur more often in children, who tend to outgrow them by adolescence, Honaker said. She also clarified that they are not the same thing as nightmares. "When a child has a sleep terror, they're asleep, so typically what will happen is they will be inconsolable, seem very upset, crying, screaming, and don't even seem to recognize the parent when the parent comes into contact with them," Honaker said.Sleep terrors can go on from 2 minutes to 20 minutes or longer, and they can be very scary for parents, she said, but parents should rest assured that sleep terrors are not at all harmful for the children."They're asleep, so there's no lost sleep, and we don't see them feeling fatigue the next day," she said. "There's typically no recall, and that's a hallmark with a sleep terror." Honaker said that anywhere from 1 to 6 percent of children will experience a sleep terror, with the typical age of onset being between 4 and 12 years old. For parents, the best thing to do is not wake the child up -- "it can actually make the episode worse because the child doesn't see them as a parent," she said. (credit:alamy)

Teeth Grinding(06 of07)

Teeth grinding, also known as bruxism, occurs when you slide your teeth back and forth, and can occur in both the day and night time, according to the A.D.A.M. Medical Encyclopedia. It can be annoying to sleep partners, and can even lead to joint pain or damage in the area.Teeth grinding is a result of any number of factors, including stress, misaligned teeth, ability to relax and sleeping habits, the A.D.A.M. Medical Encylopedia reported.Gehrman said that sometimes, lowering stress and anxiety can help to reduce teeth grinding at night. To manage teeth grinding -- though it isn't a cure -- people can go to their dentists to get a mouth guard to protect their teeth at night. (credit:alamy)

Exploding Head Syndrome(07 of07)

Exploding head syndrome is definitely more unusual than some other sleep occurrences like sleep-walking or sleep-talking, Gehrman said. "From descriptions, it's this bizarre experience that it does feel like your head is exploding" because of a loud noise going off in the head, Gehrman said. However, he noted that it's not dangerous. The American Sleep Association describes it as:

... Similar to a bomb exploding, a gun going off, a clash of cymbals or any other form of loud, indecipherable noise that seems to originate from inside the head.

Gehrman said that there is little research on the phenomenon, but it seems to be a very extreme variation of hypnic jerks -- those weird leg jerks that occur when you're first falling asleep.The American Sleep Association reported that people over age 50 and women are more likely to experience the phenomena, and that it's associated with high stress and fatigue. (credit:alamy)

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