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Carolynne shares her story in exclusive video diary

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Streaming across our channels, every day from Monday 15 May: Carolynne and Freya’s ‘week in the life’.

Freya has severe cerebral palsy, needs oxygen for chronic breathing problems, and is blind. She also has a huge personality – and enjoys having her nails painted, watching the movie Labyrinth and listening to her favourite pop star, Lewis Capaldi.

Carolynne and Freya are supported by CHAS.

Episode 7

In their final video diary, Freya smiles when she receives a special video from Lewis Capaldi – her favourite pop star!

Freya’s nurse gives her a manicure and she enjoys cuddles from her mum Carolynne while watching the Titanic.

We would like to thank Carolynne and Freya for bravely opening up their lives and for sharing their story so openly and honestly.
We hope that through these video diaries we have been able to shine a light on families caring for the most seriously unwell children across the UK. The joy. The love. And the incredible support families receive from hospices like Children’s Hospices Across Scotland.

If you are also caring for a child with a life-limiting or life-threatening condition: We are here whenever you need us.

Episode 6

TW: This video contains some scenes that some viewers may find upsetting.

Freya enjoys the music from the Coronation at Westminster Abbey which is suddenly interrupted when Freya needs support with her airway.

Carolynne talks about the impact of the Cost of Living crisis on her family and Freya gives some beautiful smiles when she wakes.

Episode 5

In her latest video diary Carolynne discusses the different medications and care required to keep Freya comfortable.

Carolynne visits CHAS with her older daughter for a relaxing painting session for parents. We also hear about their visit to the hospice at Christmas when Carolynne and Freya both had the flu and needed extra help and care.

Episode 4

Freya heads off to school and Carolynne discusses the health implications of caring 24/7 for Freya: “You can’t look after a child like Freya and not have a degree of stress. It’s not just looking after Freya. Whenever I need something for her I have to fight for it.”

Episode 3

TW: This video contains some scenes that some viewers may find upsetting.  

In her latest video diary, Carolynne opens up about the pressures of caring for Freya, and the lifeline support she receives from CHAS: “The hospice staff understand.”

Freya’s heart rate rises and Carolynne and Freya’s nurse support her from their “ICU at home.”

Carolynne also reflects on how life could be different: “She’s 13  and she should be doing her homework and going to an after school club. But that’s never going to happen. She struggles to stay alive.”

Episode 2

In their second video diary of the week, Carolynne finds time to visit the gym for the first time in four years and we hear about her concerns for her health due to the stresses and strains of caring for her daughter.

Freya struggles with her airway and we hear from Carolynne about their plans to visit a local sensory group.

Episode 1

In their first video diary, we meet Carolynne and her daughter Freya – who you may recognise from her Cost of Living campaigning work – and the incredible support she received from actress Kate Winslet.

“It’s hard being a mother of a child with severe complex health needs who relies on you so much to support their life, their survival.”


Filmed on Carolynne’s phone. Spoken in her own words.

From Monday 15 May, spend the week with mum Carolynne and her daughter Freya in their exclusive ‘week in the life’ video diary.

A glimpse into the life of a mother caring for her seriously ill child, the love they share and the support they receive from CHAS.

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