Violet’s story
“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.”
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“My husband James had one long final cuddle with her and then I had mine. Violet passed away peacefully as I cradled her in my arms.”
“Violet’s heartbeat is slowing down. It’ll be soon. Give her a cuddle now.” Adrian, our Nurse, told us. My husband James had one, long final cuddle with her and then I had mine. Violet passed away peacefully as I cradled her in my arms.
Violet was our third child and our first daughter. Whilst I was pregnant with her, a scan showed some abnormalities but I was told they were mild, and I tried not to worry. When she was born, we were told she was ok and for the first month, she was.
I was so anxious all of the time
As time went on, I felt she wasn’t developing in the same way that her older brothers had. Despite many hospital visits, I was continually told she was ok and sent home, but I knew in my heart that there was something seriously wrong.
I felt awful and I was so anxious all of the time. I’d be googling away until 2am some mornings, desperate to find out what was going on with my little girl.
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The most devastating news
Eight months later we were told the most devastating news. Violet had an ultra-rare genetic disorder – TBCK syndrome and that her life would be short.
I was so shocked. Yes, she was sick a lot, but she was so content, you wouldn’t think she had anything wrong with her. She was so smiley all of the time.
Violet loved her big brothers Theo, 7 and Logan, 5, and they just doted on her. Medical people would always comment on what Violet couldn’t do, but the boys didn’t see illness – to them she was perfect, just as she was. We were told she would never walk or talk, but they didn’t care, she was just Violet to them.
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No more pain, just peace and precious time together
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.
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.
Donate TodayHear from other families
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.
Fynley’s Story
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.
Winnie’s Story
Our Tŷ Hafan experience was out of this world. We left the hospice after Winnie’s death feeling lighter, but like our lives had turned backwards and we couldn’t suss out the path ahead. But whatever our path is now, we have been, and we still are so supported by Tŷ Hafan on this path.
Zach’s Story
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.