Merseyside mum Hayley shares how her pink-loving daughter Holly spent her life in Claire House’s care. A Liverpool hospice would have made all the difference.

“Claire House was home to us, the one place I could fully breathe. In the end, I don’t know what I’d have done without them.”

Mum Hayley was first introduced to Claire House Children’s Hospice when her daughter Holly was just a baby.

“Despite all the expectations I’d had, my little bundle of joy was born seriously ill, and we were thrust into a world of the unknown,” explains Hayley from Aintree.

“Not only would she not need any of the things we had ready for her, but we were told it was unlikely she’d see her first birthday.”

Even though Holly spent a lot of time in intensive care at Alder Hey Children’s Hospital, she continued to surprise everyone.

"It was like Holly had her own book and those chapters kept getting more interesting as the years went on. Every birthday was a milestone,” smiles Hayley.

However, caring for a child with palliative care needs was frightening. And coming to terms with needing support was one of the hardest things for Hayley as a mum.

“At first, people introduced me to the idea of a children’s hospice, but I backed away. I thought it would be a dark, sombre place, I was so scared. How wrong I was!

“As soon as I walked into Claire House, with Holly in my arms, there were children running round, there was laughter. I was met by such love and a sense of belonging. It felt like we’d gone home.”

Claire House soon became a place where Holly and her family felt fully understood.

“I will be indebted to Claire House till my last breath,” says Hayley. “They enabled us to create so many family memories. I have to really call on those memories because that’s all I’ve got now, and they were all facilitated by Claire House.

“Claire House allowed me to be a mum to Josh, and later to my youngest daughter Ruby, and we had some amazing times together thanks to Claire House,” says Hayley.

“And Holly loved it, especially the art room. She had severe osteoporosis, so her limbs would easily break, so the team would decorate her casts — pink, purple, even Easter themed!”

Sadly, Holly died aged 18.

“The first call I made was to Claire House. They were the only people who had fully understood how to take care of Holly. They were our family.

“If Holly had passed away in hospital, I would’ve carried her to Claire House Liverpool because we needed to be somewhere that felt like home, where we were loved.”

Three months later, Hayley returned to Claire House for counselling.

“Losing your child is the worst pain imaginable. Completely lost, I walked into Claire House in West Derby and they recognised I needed help. They make things better.”

Now, the mum-of-three is urging people across Merseyside to support the building of a full children’s hospice in West Derby.

“It really does take a community to raise a child. And the babies, children and young adults of Claire House need Merseyside to come together to build our West Derby hospice.

“Children like mine can spend so much time in Alder Hey, often in intensive care. Travelling from there to the Wirral is a long journey when a child is critically ill. That alone could be the difference between a child staying in hospital or being in the homely, comforting environment of Claire House.

“Sometimes, Holly would be blue, and I’d be managing her in the back of a van, thinking ‘who do I ring if she stops breathing in the middle of the tunnel? What would I do?’”

For Hayley, like so many other families, having support close to home really matters.

“Because the Liverpool site is right next to Alder Hey, it’s a marriage made in heaven. With bedrooms and specialist staff trained in palliative and end-of-life care, we could bring them straight to Claire House when they’re ready.

“The moments Claire House gave us with Holly, and as a family, will be locked in my heart forever. But I’m not unique, there are so many families needing help, we’ve got to do this for all the little Hollys out there.”