Today we get to add another interesting post into our general knowledge vault and it is made possible by Olivia Farnsworth, the girl child that does not feel pain. And that is just one of the unholy trinity that is the basis of her condition. The other two is her lack of appetite and her inability to sleep.
And this abnormally is as a result of a congenital condition in which the chromosome is deleted during the process of cell division. The condition has been termed Chromosome 6 Deletion.
She is the only person in the entire world who has all three symptoms of the “chromosome 6 deletion“. And she is from Huddersfield.
Imagine a child that doesn’t get hungry. The mental fog that would be create over the head of such a person, would be very massive. It is like a full prison sentence.
According to her mother, Nikki,it is a big challenge to get Olivia Farnsworth to really eat food. She talked about how Olivia had earlier lived on butter sandwiches for about a year.
“She became a really fussy eater and would have nothing but milk shakes,” Niki said. “At the moment, it’s chicken noodles. 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.”
Even though her mother took notice of the odd nature of her child few months after birth, it was not until little Olivia had become five years old that her strange condition was fully diagnosed.
Her mother noticed she never cried as a baby and didn’t nap in the day. The condition also meant her hair did not grow properly until she was four-years-old.
“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 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.
She fell and ripped her lips, her bottom teeth had gone through her bottom lip.
As can be seen on the photograph to our left, she tore her lips but surprisingly did not feel any pain whatsoever.
“Since she was a baby, I always thought it was weird she rarely cried. I used to tell that my baby has super powers and that she feels no pain, but I could never believe that this would be actually true! When she fell and she injured her lips, the doctors knew that something wasn’t right the moment they saw her.”
“She didn’t say anything,” Niki recalled. “She had to have major plastic surgery to correct it.”
“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.”
According to her mother Niki Trepak, the little girl has no sense of danger because she literally cannot feel pain.
On one other occasion she almost got herself killed when she was ran over by a vehicle and was dragged about 100 feet down the road.
“She got run over and dragged down the street by a car and she didn’t complain,” Niki said, shortly after the accident. “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.”
The accident cost her a tire mark over her chest, and losing skin on her toe and hip.
“She once went three consecutive days and nights with no sleep,” said Niki. “As a single mum of five it’s really hard. She’s never tired. We have to give her medication to get her to sleep.”
We do not need medical advice on this one, it is fact that sleep deprivation is a fast road trip to many serious health complications. So it is therefore not surprising to hear that Little Olivia Farnsworth is prone so sudden violent outbursts.
“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,” the mother-of-five said. “It happened in a park the other week and people were wondering what’s going on. They don’t know what’s wrong. Everybody laughs because she’s so wild and extreme. She says let’s jump off here and all the other children are like, ‘That’s way too high!’”
“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.
“To look at Olivia you don’t know anything’s wrong with her. I want people to know and to stop judging. I want to raise awareness or chromosome 6 problems.”
“There may not be anybody out there the same as Olivia,” said Dr. Beverly Searle, former research biologist and chief executive of chromosome disorder support group Unique. “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.”
“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.
There are a lot of oddities out there in the world. What man has discovered is nothing compared to what remains in hiding. But to find a young innocent child burdened by this kind of condition is both sad and beautiful at the same time.
She will never be able to fit in.
They would call her names, from super human to freak. She would always carry the mark of the abnormal wherever she goes.
These days, Olivia Farnsworth is managing to live a normal life. By eating not because she is hungry, but because it’s something everybody does around her, a practice that is for the good of both mind and body and she takes medicine in order to sleep 6 hours a day.
For Olivia Farnsworth that is what it mans to be normal.
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.