Jo Whiley speaking to camera while standing outside
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Jo Whiley on caring for her disabled sister: ‘It’s utterly exhausting – it’s very, very difficult for most people to understand’

Frances has a rare genetic disorder

Jo Whiley – who is covering Glastonbury coverage this weekend – once opened up about caring for her disabled sister.

The 58-year-old’s sister, Frances, has Cri du chat genetic syndrome – a rare genetic disorder that causes learning difficulties.

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Glastonbury host Jo Whiley on looking after disabled sister

Jo opened up about caring for her sister during an interview with The Guardian back in 2012.

“I don’t think that people have an idea what caring entails, I really don’t, because, you know, it is utterly exhausting. Someone probably like yourself or like my mum and dad, they have Frances 24/7 so just little things like she does not like them to watch television,” she said at the time.

She explained that Frances is so “insistent” that her parents don’t watch TV that they end up not doing so.

Jo also went on to say that some nights, Frances won’t go to sleep until 5am – or not at all.

Jo Whiley speaking on BBC Breakfast
Jo’s sister has Cri du chat genetic syndrome (Credit: BBC)

‘It is really tough’

Jo then went on to say that growing up, she didn’t think of Frances as “different”.

She explained that she used to do a lot with her sister and was very protective of her.

Jo then went on to discuss how her parents are Frances’ sole carers – which is “harder” for them now that they’re older.

“She is living at home now, so you know I watch what they do and the way their lives are at the moment and it is really tough when she was younger we had a lot of problems with sleeping, that was a major issue, so we always had professionals coming in and out the housing giving their advice.

“‘You should take this medicine’, ‘you should lock her in this room’, you should do this‚ and there is no answer that is what we have found out over the 40-odd years of having Frances, that there is no particular way to deal with her because it is so unpredictable, her behaviour,” she said.

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‘I wish there were more people who would help out’

Jo then went on to say that she wishes more people would help out and become carers.

She then explained how Frances has lived in several different places – however, different factors have always led to her moving back home. She said that some places have closed, whilst others simply cannot handle her.

Jo then expressed concern over what will happen to Frances once her parents pass away.

“They might have made provisions for the way their life is at the moment but it is really gruelling, it is really hard work and they don’t have, we don’t know what the solution is in the long term,” she said.

In June 2023, in an Instagram post, Jo shared snaps from Frances’ birthday, in which she spoke about how her sister is now living in care.

Read more: Investigating Witch Trials star Suranne Jones on ‘public breakdown’ following death of her mother: ‘I was offered medication, and I took it’

Glastonbury coverage airs on BBC Two and BBC iPlayer all weekend.

Jo Whiley Reveals Her Sister's Loud Voice May Have Saved Her From Covid | This Morning

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Robert Emlyn Slater
Senior Writer

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