PARENTS

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

18/01/2016 12:02 GMT | Updated 18/01/2016 12:59 GMT

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. "

olivia farnsworth

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.

olivia farnsworth

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."

olivia farnsworth

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."

olivia farnsworth

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.

SEE ALSO:

Mother Reveals Her Nine And 14-Year-Old Daughters Weigh Just Three Stone Between Them, Due To Rare Condition

Young Girl's Parents Are Selling House Because They Can't Afford Drugs For Rare Illness

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

7 Sleep Conditions