A family sat on the grass on a sunny day smiling at the camera.

Children’s stories

While every family is unique, they’re all connected by the same concern for their child.

That’s why it can be so helpful to talk to other families and learn about their journeys – how are their situations different from yours, and how are they similar? So with their families’ kind permission, we bring you a selection of stories of children known to us here.

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    a young girl in a wheel chair smiles at the camera outside.

    Matilda's story

    Born a twin and 6 weeks early, Matilda has spina bifida, fused kidneys and brain abnormalities, and she spent her first 3 months in hospital. As she’s grown, Matilda has faced many more hurdles, but her astonishing resilience and character shine through. We’re proud to support her whole family.
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    CP Content Zone 700w x 400h31

    Poppy's story

    The last thing you want at your 20-week-scan is the devastating news that your baby has a serious condition. Poppy’s parents found out she had Edwards Syndrome – and although she didn’t survive her birth, we supported the whole family leading up to the birth and helped them cope with her death.
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    CP Content Zone 700w x 400h30

    Bethanie's story

    Bethanie started getting tremors in her arms when she was 7, and eventually the specialists decided she may have a rare condition called leukodystrophy. Despite this, and with our support, Bethanie has blossomed into a typical teenage girl who loves music and going shopping.
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    A small child claps his hands whilst sat on the grass.

    Jacob's story

    Little Jacob has Down syndrome, but not long after he was born he stopped breathing and had a series of apnoea attacks. He spent months in hospital, and now needs a lot of care. We look after Jacob once a fortnight at home, and we provide respite care so his family can have a break.
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    A father at play with his child throws in in the air playfully.

    Thomas's story

    Tomas was poorly when he was born, and he was later diagnosed with CCHS, for which there’s no cure. He needs support to breathe, so his family are on alert 24/7. They all come to us together for mini-breaks, and we take Hospice at Home out to them so our nursing support can relieve his family.
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    CP Content Zone 700w x 400h27

    Hafzah's story

    After a normal pregnancy, Hafzah’s parents were shocked to see her turn blue during a feed. Eventually diagnosed with the rare disorder nemaline myopathy, Hafzah now needs help with her breathing and has a feeding tube. Yet, with our support, she’s flourished and is now almost a teenager.
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    Shalome's story

    A scan in pregnancy revealed that Shalome had severe brain abnormalities which might make her ‘incompatible with life’. So before the birth, the family came to us and found peace and a home-from-home here. Shalome defied the odds by arriving safely, and continues to receive our support.
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    CP Content Zone 700w x 400h25

    Gregor's story

    Gregor was a perfectly healthy toddler until swine flu hit. He battled bravely for months, and spent a long time in hospital. Thankfully, he survived, but the virus left him with brain damage and he needs help to eat and breathe. His family makes good use of our Hospice at Home service.
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    small boy with finger in his mouth smailes at the camera.

    Jawad's story

    Despite his parents being told he might not survive birth, Jawad arrived safely. However, he has a rare genetic condition, a congenital disorder of glycosylation, His parents were stressed out and exhausted until they heard about our hospice, and we now support them here and at home.
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