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Two families who both tragically lost their daughters to incurable diseases tell their story of how they found peace thanks to Tŷ Hafan children’s hospice.

Violet Taylor, from Caerphilly, and Winnie Griffiths, from Llanelli, were both diagnosed with rare genetic conditions during the summer of 2023.

Anton, a baker and Winnie’s father, said: “We first met in the relatives room in paediatric intensive care in hospital in Cardiff.

“There were so many parallels between our family and James and Emily’s family, but that was no comfort. I just remember thinking ‘don’t let it be the same thing happening to them as is happening to us.’”

Emily, a civil servant and Violet’s mother, said: “Comfort isn’t the right word. We weren’t glad Candice and Anton were going through what they were going through at all.

“We were thinking about them so much on the day Winnie was transferred to Tŷ Hafan. I was beside myself. I didn’t want any of us to be in that position.”  

After weeks in intensive care, Winnie’s parents were given the devastating news that their beloved daughter had Alexander Disease, and that her health was deteriorating so rapidly that a transfer to Tŷ Hafan Children’s Hospice might, within hours, no longer be an option for them.  

Winnie was transferred to Tŷ Hafan on July 6, 2023 and died in her mother’s arms the following day.

Just a few weeks later, James and Emily found themselves in the same agonising position. Violet, who had been diagnosed with the rare genetic disease TBCK, was deteriorating rapidly with no hope of a cure.

She was moved to Tŷ Hafan for end-of-life care, and on August 24, 2023, she died in Emily’s arms. 

Emily said: “Violet was 11-months-old when we came to Tŷ Hafan for her end-of-life care. The weather was glorious.

“Violet hadn’t been outside in months because she’d been in hospital, so to be able to take her outside in the fresh air, with the sun on her face and the sounds of the waves is such a precious memory.

“Violet told us in her own way that this is where she wanted to be. We heard her giggle for the first time in months and her smiles were constant.

“There was no more pain, no more fighting, just peace and precious time together. There are no words to say what that means to us.”   

While the two families kept in touch via social media, it wasn’t until Tŷ Hafan’s annual summer bereavement service that they all met again and began the next chapter of their friendship. 

James added: “After the service we all spent hours in the garden, just talking to one another – about all we had been through, how we were feeling, and about our little girls.  

“During everyday life, people don’t understand what you have been through, so you have to reserve yourself. So when me and Anton had our chat after the bereavement service, it was nice. A weight was lifted.”

With this and many other similar stories in mind, Tŷ Hafan has launched its ‘When your world stops’ appeal, with the aim of raising £75,000 to help as many families as possible with the support they need once their child has died.

For more information and to donate, you can visit Tŷ Hafan’s website.