We were in intensive care when a doctor first mentioned Tŷ Hafan to us. Anton didn’t know what it was, but I did. ‘Tŷ Hafan’s a hospice,’ I thought. ‘No way is Winnie ever going there.’
Winnie wasn’t like her big brothers, Arthur and Henry. She was a delicate little thing. The boys loved their food, but Winnie wasn’t a good feeder at all. But she was happy, a contented baby with big blue eyes and blonde hair.
I was so happy, our family was perfect and now complete. I had a daughter so I could have that special bond that I have with my mother.
As time went on though, she started to lose weight, and while she would smile and giggle, she wasn’t talking. I thought she was just a little bit behind.
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Then Winnie started to get quiet. She was eight months old and in hospital with tummy problems. But then the doctors told us they’d found a white mass on her brain.
They told me and Anton to go home and spend as much time as possible with Winnie as they didn’t know how much time she had left.
I just couldn’t – and wouldn’t – believe it.
We had Winnie home for four weeks. Our routine was full on but I was prepared to do anything for her. She loved Wotsits and Poppadums and could wrap us all around her little finger! And she idolised her big brothers.
But she went bad again, went back to intensive care and a few weeks later another scan showed the mass had grown. The doctors told us Winnie had Alexander’s Disease, and she wasn’t going to get better. That was the moment of realisation for us.
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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.
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.
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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.
Our Tŷ Hafan experience was out of this world. We left the hospice after Winnie’s death feeling lighter, but unsure of the path ahead. But whatever our path is now, we have been, and continue to be, supported by Tŷ Hafan.
Every family facing the death of their child deserves to have the same support from Tŷ Hafan that we have.
Donate todayWe are incredibly grateful for the amazing generosity of everyone who has contributed to our appeal so far! If you haven’t yet had the chance to donate, now is the perfect time to get involved. Every contribution, no matter how big or small, goes straight towards helping families in Wales through their child’s short life, death and beyond.
As part of our campaign, we’re proud to share the heartfelt stories of three incredible families who have been impacted by the support of Tŷ Hafan. Each story is a powerful reminder of the vital role your donations play in providing care and support to families like these.
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. It’s what every parent needs when they lose their child and my heart breaks to know that not every family has that.
At first, I didn’t want to go there, we thought it was just somewhere children went to die, but we couldn’t have been more wrong. When we went to look around, I was so surprised. It wasn’t sad or morbid; it’s a lovely place. The times we had together at Tŷ Hafan were the most precious ever. I treasure those memories.
Tŷ Hafan was quiet and peaceful, so that’s where Zach spent his final days. He was back in a calm environment without the constant checks, tests and needles. He was given space to relax.