Winnie Griffiths and Violet Taylor were the longed-for first baby girls in their respective families, both little sisters to two older brothers. Born within months of each other in 2022, Winnie from Llanelli and Violet from Caerphilly were adored by their parents and wider families.
Both became increasingly unwell and were diagnosed with rare genetic conditions. Late last summer they died within weeks of each other at Tŷ Hafan Children’s Hospice.
Now their parents are bravely sharing their stories – and talking about the extraordinary friendship they have developed through the most devastating of losses – to support Tŷ Hafan’s When Your World Stops appeal.
The aim of the appeal, which launches on Monday (November 4), is to raise £75,000 to help as many families as possible with the support they need once their child has died.
Anton, a baker and dad of Arthur, Henry and Winnie (pictured in their football tops), 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 mum to Theo, Logan and Violet (pictured below), 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.”
“It was nice to speak to Anton as another man,” said James. “Women talk more anyway. I felt quite alone. It was hard, I was upset a lot, but I couldn’t show it. The similarities between what we were all going through were not comforting – but being able to speak to Anton made me feel like I wasn’t so alone.”
After weeks in intensive care, Winnie’s parents were given the devastating news that their beloved little girl 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 6 July 2023 and died in her mother’s arms the following day in the early afternoon.
“I’d hated the thought Tŷ Hafan, but going up the drive with Winnie, it was a hot day, all the flowers were blooming and there were bees and butterflies. It was magical. You feel a sense of calm. Everything’s lifted. You go up and over the hill and it’s like you’re off the earth. You’re that step closer to heaven,” says Candice.
“Off all the tubes and monitors, Winnie was the best she had been in a long time – the most free. I even took her outside in my arms for a little while. It was like she had that one last boost of energy to say goodbye to everyone. That short time means so much to us, the boys and all our family.
“That night I stayed up with her. I felt so useless and frightened. But Kirsty was with us all the time, and Emma. They were brilliant and Winnie eventually settled.
“As the sun came up we were sitting on the windowsill overlooking the beach. It was quiet, but you could hear the sea and I know it comforted Winnie, as it did us. There was just us and nature – bees, robins, magpies, squirrels and a woodpecker. They all had their jobs to do. Winnie passed away in my arms early that afternoon and everything was beautiful.”
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. Mid August she was moved to Tŷ Hafan for end-of-life care and on 24 August she died in Emily’s arms.
“Violet was 11 months old when we came to Tŷ Hafan for her end-of-life care,” says Emily. “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 Candice and Emily kept in touch via Facebook, it wasn’t until Tŷ Hafan’s annual summer bereavement service that they all met again and began the next chapter of their extraordinary friendship.
Says James: “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. I could chat his ear off for as long as I needed to, it was like a little bit of therapy, and I felt better afterwards. And it felt natural as well. I didn’t feel nervous. I didn’t feel like I had to hold my tongue. I could turn around and say: ‘How you doing mate? You good? Or you feel like rubbish today? I bet you do. Yeah, I do too.’ And I didn’t feel like I was going to upset him, or it was awkward.
“Tŷ Hafan gives us the space and opportunities to get together – ours is not a normal kind of friendship where you could arrange to meet for a coffee or go to the pub. It doesn’t work like that for us. What Tŷ Hafan provides us with is so important and we can’t get it anywhere else.”
“Every family facing the death of their child needs to have the same support from Tŷ Hafan that we have,” says Candice.
“Tŷ Hafan were there for us when Violet was dying, they were there for us when she died and they have been there for us since then,” says Emily. “It’s what every parent needs when they lose their child and my heart breaks to know that not every family has that.”
Jenna Lewis, Director of Income Generation at Tŷ Hafan Children’s Hospice, said: “I want to thank Candice, Anton, Emily and James, and all the families involved with this campaign, for their bravery in sharing their children’s stories to help Tŷ Hafan raise more money so we can provide bereavement support for even more families like theirs.
“No parent ever imagines that their child’s life will be short. Sadly, this is the reality facing thousands of families in Wales and right now we are only able to help 1 in 10 families who need our help. We know that there are thousands of families who do not receive the support they need after their child has died.
“Our When Your World Stops Appeal launches today and we’re aiming to raise £75,000 so we can provide bereavement support for even more families like Winnie’s and Violet’s so that we can make sure that no one in Wales lives their child’s death alone.”
Tŷ Hafan’s When Your World Stops Appeal runs from Monday 4 November to Sunday 8 December and aims to raise £75,000 towards its specialist bereavement services.
Pictured above in Tŷ Hafan’s dedicated Memorial Garden, James and Emily Taylor, holding their daughter Violet’s pebble, with their friends Candice Jones and Anton Griffiths with their pebble in memory of their daughter, Winnie.