Olivia Farnsworth with a rare chromosome 6 deletion doesn't eat and rarely sleeps

June 2024 ยท 4 minute read
Olivia Farnsworth, seven, has a rare chromosome condition stopping her from feeling hunger, fatigue or pain

Olivia Farnsworth, seven, has a rare chromosome condition stopping her from feeling hunger, fatigue or pain

She barely eats, sleeps and doesn't feel pain leading doctors to dub her the 'bionic' girl.

Olivia Farnsworth baffled doctors when she was hit by car and dragged down the street but walked away without shedding a tear.

The seven-year-old, who often goes up to three days and nights without sleeping, has a condition is described as chromosome 6 deletion.

She is believed to be he only person in the world to exhibit the three symptoms together. 

Mother, Niki Trepak, 32, from Huddersfield said the condition meant her daughter had 'no sense of danger.' 

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

'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.

'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. 

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

The mother-of-five said the signs of Olivia's condition started when she was just a few months old.  

Ms Trepak said Olivia never cried as a baby and stopped sleeping in the day from the age of nine months.

The condition also meant her hair did not grow properly until she was four-years-old.  

'She became a really fussy eater and would have nothing but milk shakes. At the moment it's chicken noodles,' she said.

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'She lived on butter sandwiches for about a year. She doesn't feel hunger so I can't threaten her like other children by saying if you don't eat that you'll not get this as she isn't bothered.

'She also once fell badly and ripped her lip off and didn't say anything. She had to have major plastic surgery to correct it.'

Olivia now takes medication to sleep and is generally a happy child but can suffer from violent outbursts, 

Olivia has been dubbed the 'bionic girl' as it is thought she could be the only person in the world to exhibit the three symptoms together. She bit through her lip and didn't even notice, her mother said

Olivia has been dubbed the 'bionic girl' as it is thought she could be the only person in the world to exhibit the three symptoms together. She bit through her lip and didn't even notice, her mother said

Olivia's condition means she doesn't feel pain and left her prone to accidents. She is pictured here in hospital after being knocked over by a car and dragged down the road

Olivia's condition means she doesn't feel pain and left her prone to accidents. She is pictured here in hospital after being knocked over by a car and dragged down the road

'She's head-butted me, punched and kicked me and can have outbursts of swearing which can be embarrassing if we're out in public,' said Ms Trepak.

'It happened in a park the other week and people were wondering what's going on. They don't know what's wrong.

'This is why I want to raise awareness or chromosome 6 problems. To look at Olivia you don't know anything's wrong with her.

Ms Trepak, who is also mother to Ella-Mae, 12, Bradlee, 10, Archie, six and four-year-old Poppy, said the family has been supported by chromosome disorder support group Unique.

Chief executive Dr Beverly Searle, a former research biologist, said Olivia was the only case they had heard of in the world. 

Of 15,000 chromosome disorder cases on their worldwide database - just 100 are the '6p' deletion that Olivia has.

'There may not be anybody out there the same as Olivia,' she said.

'You can't treat chromosome disorders but what we can do is alleviate the symptoms.

'We try to find matches and provide information for families, which can be great for friendship and local support.' 

Olivia doesn't feel hunger but has been conditioned to eat. She is usually a happy child but can occasionally suffer from violent outbursts, her mother said

Olivia doesn't feel hunger but has been conditioned to eat. She is usually a happy child but can occasionally suffer from violent outbursts, her mother said

The condition means Olivia, pictured with her mother and four siblings, has no sense of danger whatsoever

The condition means Olivia, pictured with her mother and four siblings, has no sense of danger whatsoever

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