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Thursday, March 28, 2024

A mum has watched her family's real life horror unfold on TV

Credit: SWNS STUDIO
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A mum has watched her family's real life horror unfold on TV
A mum has watched her family's real life horror unfold on TV

A mum watched her family's real life horror unfold on TV where Oliver Battersby from Corrie was diagnosed with the same incurable condition as her daughter.In Coronation Street, the three-year-old son of Leanne Battersby and Steve McDonald has been diagnosed with mitochondrial disease.TV mum Leanne has struggled to come to terms with her son's diagnosis, and recent episodes of the ITV soap have seen her contemplate her life without him.But one mum knows all to well what it's like to watch the cruel inherited disease take hold.Beckie Hilling, 45, said just a year ago daughter Kiya, nine, was winning the skipping race at school sports day and loved nothing more than horse riding and rollercoasters.But frequent headaches sparked worries, and the schoolgirl was recently diagnosed with rare mitochondrial disease - caused by mutations in body cells.It's inherited - and weeks later brave Beckie was given the same diagnosis, and faces and anxious wait to see if her sister and mum suffer from the same condition.Kiya has has recently started using a wheelchair at times because her muscles are so weak, and eventually she will likely lose her ability to walk, talk and open her eyes.But for now - just like the Battersby family in Coronation Street - Beckie is putting on a brave face for her little girl.Mum Beckie, from Spalding, Lincolnshire, said: "Just over a year ago, she was completely healthy as far as I was aware.

None of us saw it coming."Getting that news - your whole world just falls apart.

All the plans we had for the future, now we don't know how long we have with her."I'd always heard stories of other children falling ill and was so thankful I had a healthy child."It's literally a living nightmare."The family hopes Kiya's story - and the TV storyline - will help to address the lack of knowledge around mitochondrial disease.Beckie's sister Clare Jacomb, 43, said: "It's brilliant that the illness has been featured on Coronation Street, because it has raised awareness.

People just hadn't heard of it."The story is really hard-hitting, but equally, it's different when it's a real-life story and a real family, with someone who is actually going through it."We just need more people to be aware of this terrible illness.

It's robbing children and adults of any quality of life."Kiya was a completely healthy eight-year-old, until she began getting headaches in early 2019, which were the first symptoms of mitochondrial disease.In March 2019, Kiya had her first seizure of many seizures, which can last up to 13 hours, forcing doctors to sedate her.Beckie has watched in horror as Kiya's health has deteriorated, and she was diagnosed in March this year with mitochondrial disease.It's a rare condition caused by mutations in the mitochondria, which are tiny organelles in almost every cell in the human body, which produce energy for the cells to function.The disease is passed down genetically, and can be found in several forms, with a variety of symptoms depending on which cells and organs are affected.Beckie said: "Kiya was top of the class, really clever, and she had a great sense of humour. "She loved horse-riding and she won the skipping race in her school sports day. "She was also a real daredevil, and she used to love going to theme parks for the rollercoaster rides."Now, she's too poorly to do any of that."The type of mitochondrial disease Kiya has is called MELAS, which means that as well as muscle deterioration, headaches and seizures, she's at risk of potentially fatal stroke-like episodes."Kiya knows she's poorly, but she doesn't know how bad the situation is going to get," Beckie said."She might get the point where she can't open her eyes, and she won't be able to talk, walk or move."Every day she's telling me about dreams she has for the future, and it breaks my heart.

She has a little boyfriend at school and she talks a lot about how they'll get married and have kids."How do you tell your child she might not live that long?"I can't believe it's happening.

You hear the stories of it happening to other people but you can't ever imagine it happening to you.

Then all of a sudden, you're living it."Beckie was tested for the condition following Kiya's diagnosis, which can arise spontaneously, but also can be passed down through maternal genes. Doctors thought Beckie might be a carrier of the disease - but in May this year, she was told she has the condition herself.While Beckie's condition is much milder, but she still suffers with tiredness and muscle pain.Beckie said: "I was shocked to learn I also have the condition, but now I know, it makes sense, as I have symptoms."With Kiya's illness and my own diagnosis, it's been difficult. "People have told me they're amazed I've managed to keep putting one foot in front of the other."But the thing is, I never really think about my own situation, as long as I'm well enough to keep on looking after Kiya."Beckie, who is now Kiya's full-time carer, and her husband Ian Hilling, 43, who works as an electrical engineer, have put their three-bed house up for sale so they can move into a bungalow, because soon Kiya will be too weak to use stairs.Beckie's sister, Clare and their mother, Evelyn Jacomb, 67, will also now be having tests.If Clare has it, her four children, aged seven to 21, will also have to be tested.Clare said: "Having seen the impact it's had on my niece, I can't get my head around the fact that my children could have it."Despite this worrying situation for her, she has been by Beckie's side, and has recently also taken time off her job as a receptionist at a hair salon to be close to hand.Clare has spent a lot of time researching the condition.Her research has revealed a lack of knowledge of medical professionals and the general public alike, around mitochondrial disease.She said: "Even the doctors and nurses don't know a lot about the condition - there has been so many occasions when medical professionals have said to us 'oh, I've never heard of that'."Because of this, the diagnosis took a long, long time. "At one point, we had 12 specialists in one room looking at Kiya's scans, and not one of them knew what it was."In the meantime, Kiya's seizures were getting so bad that she was having to be sedated to stop them."The research team of the ITV programme have worked closely with The Lily Foundation, a UK charity for people with mitochondrial disease and their families. Beckie and Clare have also been in touch with the charity in the past, to get support for the family.Clare believes this national TV coverage is a huge step forward for people suffering from the condition.

A mum watched her family's real life horror unfold on TV where Oliver Battersby from Corrie was diagnosed with the same incurable condition as her daughter.In Coronation Street, the three-year-old son of Leanne Battersby and Steve McDonald has been diagnosed with mitochondrial disease.TV mum Leanne has struggled to come to terms with her son's diagnosis, and recent episodes of the ITV soap have seen her contemplate her life without him.But one mum knows all to well what it's like to watch the cruel inherited disease take hold.Beckie Hilling, 45, said just a year ago daughter Kiya, nine, was winning the skipping race at school sports day and loved nothing more than horse riding and rollercoasters.But frequent headaches sparked worries, and the schoolgirl was recently diagnosed with rare mitochondrial disease - caused by mutations in body cells.It's inherited - and weeks later brave Beckie was given the same diagnosis, and faces and anxious wait to see if her sister and mum suffer from the same condition.Kiya has has recently started using a wheelchair at times because her muscles are so weak, and eventually she will likely lose her ability to walk, talk and open her eyes.But for now - just like the Battersby family in Coronation Street - Beckie is putting on a brave face for her little girl.Mum Beckie, from Spalding, Lincolnshire, said: "Just over a year ago, she was completely healthy as far as I was aware.

None of us saw it coming."Getting that news - your whole world just falls apart.

All the plans we had for the future, now we don't know how long we have with her."I'd always heard stories of other children falling ill and was so thankful I had a healthy child."It's literally a living nightmare."The family hopes Kiya's story - and the TV storyline - will help to address the lack of knowledge around mitochondrial disease.Beckie's sister Clare Jacomb, 43, said: "It's brilliant that the illness has been featured on Coronation Street, because it has raised awareness.

People just hadn't heard of it."The story is really hard-hitting, but equally, it's different when it's a real-life story and a real family, with someone who is actually going through it."We just need more people to be aware of this terrible illness.

It's robbing children and adults of any quality of life."Kiya was a completely healthy eight-year-old, until she began getting headaches in early 2019, which were the first symptoms of mitochondrial disease.In March 2019, Kiya had her first seizure of many seizures, which can last up to 13 hours, forcing doctors to sedate her.Beckie has watched in horror as Kiya's health has deteriorated, and she was diagnosed in March this year with mitochondrial disease.It's a rare condition caused by mutations in the mitochondria, which are tiny organelles in almost every cell in the human body, which produce energy for the cells to function.The disease is passed down genetically, and can be found in several forms, with a variety of symptoms depending on which cells and organs are affected.Beckie said: "Kiya was top of the class, really clever, and she had a great sense of humour.

"She loved horse-riding and she won the skipping race in her school sports day.

"She was also a real daredevil, and she used to love going to theme parks for the rollercoaster rides."Now, she's too poorly to do any of that."The type of mitochondrial disease Kiya has is called MELAS, which means that as well as muscle deterioration, headaches and seizures, she's at risk of potentially fatal stroke-like episodes."Kiya knows she's poorly, but she doesn't know how bad the situation is going to get," Beckie said."She might get the point where she can't open her eyes, and she won't be able to talk, walk or move."Every day she's telling me about dreams she has for the future, and it breaks my heart.

She has a little boyfriend at school and she talks a lot about how they'll get married and have kids."How do you tell your child she might not live that long?"I can't believe it's happening.

You hear the stories of it happening to other people but you can't ever imagine it happening to you.

Then all of a sudden, you're living it."Beckie was tested for the condition following Kiya's diagnosis, which can arise spontaneously, but also can be passed down through maternal genes.

Doctors thought Beckie might be a carrier of the disease - but in May this year, she was told she has the condition herself.While Beckie's condition is much milder, but she still suffers with tiredness and muscle pain.Beckie said: "I was shocked to learn I also have the condition, but now I know, it makes sense, as I have symptoms."With Kiya's illness and my own diagnosis, it's been difficult.

"People have told me they're amazed I've managed to keep putting one foot in front of the other."But the thing is, I never really think about my own situation, as long as I'm well enough to keep on looking after Kiya."Beckie, who is now Kiya's full-time carer, and her husband Ian Hilling, 43, who works as an electrical engineer, have put their three-bed house up for sale so they can move into a bungalow, because soon Kiya will be too weak to use stairs.Beckie's sister, Clare and their mother, Evelyn Jacomb, 67, will also now be having tests.If Clare has it, her four children, aged seven to 21, will also have to be tested.Clare said: "Having seen the impact it's had on my niece, I can't get my head around the fact that my children could have it."Despite this worrying situation for her, she has been by Beckie's side, and has recently also taken time off her job as a receptionist at a hair salon to be close to hand.Clare has spent a lot of time researching the condition.Her research has revealed a lack of knowledge of medical professionals and the general public alike, around mitochondrial disease.She said: "Even the doctors and nurses don't know a lot about the condition - there has been so many occasions when medical professionals have said to us 'oh, I've never heard of that'."Because of this, the diagnosis took a long, long time.

"At one point, we had 12 specialists in one room looking at Kiya's scans, and not one of them knew what it was."In the meantime, Kiya's seizures were getting so bad that she was having to be sedated to stop them."The research team of the ITV programme have worked closely with The Lily Foundation, a UK charity for people with mitochondrial disease and their families.

Beckie and Clare have also been in touch with the charity in the past, to get support for the family.Clare believes this national TV coverage is a huge step forward for people suffering from the condition.

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