Mum Katie will never forget the Christmas magic she shared with Ava — and the Claire House team who were there for them.

“Ava was cheeky. She was funny. She knew what she liked.”

That is how Katie remembers her daughter: a happy, determined little girl who loved Minnie Mouse, Peppa Pig, and everything Disney.

For the first years of her life, Ava was developing as expected. Then she began saying her legs were sore.

“Shortly after Ava turned two, she had an MRI scan,” shares Katie. “That day, my world changed forever.”

Ava was diagnosed with metachromatic leukodystrophy, a degenerative, life-limiting condition.

“She was fine the week before,” Katie remembers. “Then she slowly started to lose all her abilities — walking, talking, her fine motor skills. She then became tube fed.

“It was pretty much overnight.”

That was when Claire House got involved.

Katie felt nervous at first. She had heard of the hospice, but she did not yet know the full extent of the care, joy and comfort it could offer.

“Honestly, it was the best thing that could have happened when Ava got sick,” Katie says. “I wouldn’t be where I am today, without Claire House.”

Claire House helped the family navigate the shock of Ava’s diagnosis while creating opportunities to enjoy cherished moments together.

Ava received support from across the hospice’s services, including specialist palliative care, respite stays, complementary therapies, and aquatic therapy.

During respite stays, the Claire House team looked after Ava’s clinical needs, giving Katie precious time with her. “I think one of the best things about Claire House is that I was just her mum,” she says.

Christmas was especially important to Katie. Ava loved Disney, so Katie made every celebration as special as she could.

“We all came together at Christmas, to make it magical for Ava,” Katie says.

The family even created a spectacular Disney Christmas tree - a tradition Katie continues today.

As Ava began to lose everyday skills, Katie found new ways to help her enjoy Christmas.

“Ava was the first to put decorations on the tree. When Ava lost her sight, I put bells on her gifts so she could still hear them.

“I still tried to let her know that it was special for her,” Katie says.

Ava and her family also took part in Christmas activities at Claire House, from meeting Father Christmas and festive outings to making special handprint and footprint baubles, which still go on Katie’s tree every year.

“Everything on the tree means something, especially all the Claire House ones,” Katie says.

One of Ava’s final Christmas experiences was a festive photoshoot at Claire House. No one knew how precious those photographs would become.

“They were bittersweet,” Katie says. “But they’ll be my favourite memories forever.”

Claire House became more than a place of care for Katie and Ava.

“They have been my rock,” says Katie. “When you’re in the hardest time of your life and it just can’t get any worse, they somehow come and lift you up.”

Claire House Nurses Laura and Kate became people Katie trusted completely, supporting her through difficult medical conversations.

“They were Ava’s ‘medical mums’, taking responsibility for the clinical side of Ava’s care so I could just be mum,” Katie says.

Ava became suddenly very unwell two days after Christmas in 2023, when she was eight years old.

Laura and Kate were fortunately both on call that Christmas and could be there with Ava and Katie at the end. “Ava gave us one last Christmas and that was special,” Katie says. “I was so grateful that Kate and Laura could be there with us.”

After Ava died, Claire House helped Katie take her home from hospital. The family then moved to the Butterfly Suite at Claire House, bringing Ava’s own bedding, lights and Disney teddies to make the space feel familiar. Ava had always worn matching pyjamas, socks and bows, and the team continued to care for her with the same attention.

“They were still making her a princess,” Katie says.

Claire House also made sure Katie and her family were cared for. The team gave them space to remain together, made sure they had food and handled practical things no family should have to face alone.

“They let you just be in the moment,” Katie says. “For me, I was just with Ava.”

For Katie, Claire House’s care did not end when Ava died. That ongoing relationship has helped Katie through the hardest period of her life.

“Caring doesn’t just stop,” she says. “From the minute I met them until right now, they just don’t stop.”

Christmas is still bittersweet for Katie. But Ava remains at the heart of it.

“Although Ava isn’t here to share it with me, I want to keep Christmas magic,” says Katie. “And Ava will keep Christmas magic for me forever.”

This Christmas, you can help make every Christmas count. By donating to Claire House, you can help a child or young adult like Ava make their last Christmas wish.