Jenny Agutter opens up about her niece’s battle with cystic fibrosis

Actress Jenny Agutter reveals her niece with cystic fibrosis wasn’t expected to live to her teens but has turned 40 – and her incredible story inspired a Call The Midwife episode

  • Jenny Agutter, 65, spoke about her niece’s battle with cystic fibrosis on Lorraine 
  • The actress said Rachel, 40, wasn’t expected to live to her teenage years 
  • She beamed as she revealed Rachel had recently celebrated her 40th birthday
  • Rachel’s story inspired an episode of Call The Midwife, which her aunt stars in
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Jenny Agutter has revealed that her niece who has cystic fibrosis wasn’t expected to live until her teenage years – but has just turned 40.

Appearing on ITV’s Lorraine, Jenny, 65, beamed as she revealed that Rachel had reached the milestone.

The Call The Midwife actress revealed how an episode of the show six years ago was inspired by her niece’s story, as the condition was only recently discovered when the series was set in the 1950s.

She is now campaigning with Jeans For Genes to raise awareness of the condition and to encourage parents to get their children tested so it can be spotted and treated earlier.


Jenny Agutter, 65, opened up about her niece’s battle with cystic fibrosis on ITV’s Lorraine, revealing how she wasn’t expected to live until her teenage years. Pictured: Jenny on Lorraine on Tuesday


Rachel, 40, didn’t ‘thrive’ as a baby and has lived longer than doctors thought. The prognosis is that 50 per cent of people with Cystic Fibrosis will live until they are 30. Pictured: Jenny with her niece Rachel

Jenny, who plays Sister Julienne in Call The Midwife, put the idea forward to producers to tell the history of the condition, as the defective gene was discovered and named in that time.

She said: ‘One of the reasons I wanted to do it is because people still don’t know about it today, even though it’s one of the most common life-threatening hereditary conditions.’

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Symptoms in babies include difficulty putting on weight and growing, which is what happened to Rachel when she was born.

Jenny said: ‘Until my niece was born I knew nothing about it at all. She didn’t appear to be thriving like the baby in the story and they discovered it was cystic fibrosis, which affects the lungs and the digestive system. It’s matter of keeping it healthy.’


An episode of Call The Midwife (pictured) was inspired by Rachel’s story, as the condition was only recently discovered when the series was set in the 1960s


Jenny is campaigning with Jeans for Genes to raise awareness of the condition and to encourage parents to get their children tested. Pictured: Jenny on Lorraine with host Lorraine Kelly, 58

When Rachel was born her parents were told she wouldn’t live to be a teenager but she recently turned 40.

Now the prognosis is that 50 per cent of people with Cystic Fibrosis will live until they are 30.

Jenny said: ‘When she was born it was 40 years ago, she’s just had her 40th birthday. At that time the fear, what they had to tell families at that time, was that often 50 per cent of the children didn’t actually become teenagers. 


Pictured: Jenny (right) as Sister Julienne with her co-star Judt Parfitt as Sister Monica Joan. The Call The Midwife actress revealed how an episode of the show was inspired by her niece’s story, as the condition was only recently discovered when the series was set in the 1950s

‘Today they’re looking at 50 per cent not getting beyond their 30s. It’s changed enormously, which is why everyone’s striving very hard for all the changes now. 

‘There are new medications coming through all the time. One’s very much campaigning to make sure those medications came come into the UK.’ 

Jenny previously revealed her belief that Cystic Fibrosis killed her brother and sister.

Speaking to the Mirror, she revealed that when Christopher was born he died from stomach blockages, her sister Bridget arrived early and died from the same problems.

What is cystic fibrosis?

‘Cystic fibrosis is a genetic disease that causes persistent infections in the lungs and limits one’s ability to breathe over time.

A defective gene causes a thick, sticky buildup of mucus in the lungs, clogging airways and trapping bacteria that leads to infections, lung damage and eventual respiratory failure. 

Mucus buildup also occurs in the pancreas, preventing the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

CF is typically diagnosed in infancy and has a life expectancy rate of 37 years old. 

There are approximately 30,000 cases of CF in the US, with roughly 1,000 new cases diagnosed each year.’ 

Source: The Cystic Fibrosis Foundation 

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