Why this teddy bear is breaking hearts - and the moving charity appeal it's inspired

He carries the memory of six-year-old Ezra, who filled every ‘miracle’ moment he shared with his family with giggles and joy.

Ezra Bear is the symbol of Ezra’s Appeal, a powerful new Christmas appeal from Acorns Children’s Hospice launched this week, that tells the emotional story of the special little boy he was named after – and how the charity gave his family the precious gift of time together.

Ezra was a happy, loud little boy who loved cuddles. His ‘morning song’ of laughter and blowing raspberries is still one of this family’s favourite memories.

At just four months old, in a ‘world ending moment’ for his parents John and Suzanne, Ezra was diagnosed with an extremely rare, life-limiting condition called Zellweger Spectrum Disorder.

It is so rare in fact, that Ezra is thought to be amongst just a handful of children in the UK, with only 500 known cases worldwide.

Hospital doctors told John and Suzanne it was likely Ezra wouldn’t reach his first birthday, leaving them ‘all on their own, in a dark, broken place’.

“It was a world-ending moment for us,” John explained. “Our tiny baby was just four months old. From walking into hospital one Friday morning expecting good news, to being discharged that same afternoon with the news that he was dying – we were in absolute despair.

“We were left all on our own, with nothing but an information sheet. Suddenly, our world became a dark, broken place, full of fear and uncertainty about how long we had with Ezra. It was terrifying.”

It was just 48 hours later that Acorns stepped in, at the time when the family needed them most.

John said: “By that Sunday, Acorns had scooped us up in their safety net. It felt like a warm hug at the moment we needed it most. They told us we weren’t on our own and they could help. It meant everything.”

Through Acorns, John and Suzanne, Ezra and his two brothers Eli and Ethan were able to experience moments they never thought possible – quiet afternoons cuddling, joyful firsts and magical Christmases filled with love and togetherness.

Initially hesitant about the idea of a hospice, the family was amazed by the breadth of support Acorns offered.

“As soon as we walked through the door, it felt like all our needs were immediately met by people who knew what they were doing,” John said. “And that was all we were searching for; people who could help us give him a great life, no matter how long it was going to be.

“They not only came into our lives armed with information and emotional support, they gave us the medication Ezra crucially needed to ease his pain.

"Seeing your child in pain is just about the worst thing ever. If his life was going to be short, we wanted it to be happy. When the medication started to take effect, it felt like we could breathe again.”

Ezra defied the odds, spending six magical years with his family before saying their final goodbyes in July 2022. He will always be ‘forever six’.

But through Acorns, Ezra was able to experience many special moments and enjoy things his family had longed for.

John explained: “There were so many firsts we wanted him to have, like swimming in the hydrotherapy pool or stroking the therapy dog he adored. Acorns made them possible.

“They treated him like a prince – it didn't feel like life loved him much because of all the difficulties he faced, it made us feel so warm to know he was so loved.”

Acorns also supported Ezra’s siblings, Ethan and Eli, throughout his short life and continue to even after his death.

“Acorns sibling service provides an unbelievably well-rounded support system for the boys,” John said. “While most support systems were taken away overnight after Ezra died, my boys still attend sibling groups and get to experience unforgettable moments."

Ezra's memory lives on, not just in treasured moments spent together, but with the help of a precious teddy bear containing some of his ashes.

Ezra Bear, in his mini-Walsall FC shirt celebrating his family’s proud football passion, is part of every moment that matters. He’s there as the family gathers around the tree, as presents are opened and as even more memories are made.

John explained: “Ezra was cremated, and we were given the option to put some ashes inside a bear. We think of it as physical reminder of everything that Ezra was – small and soft and cuddly, all the good things that a teddy bear is.

"And we missed the weight and having something to hold, because when you lose your baby, you miss them in your arms and your body. So, to have something that we can cuddle brings us a little bit closer because there is part of him that's always with us.”

Through Acorns, Ezra is also remembered in the memories and keepsakes the family made together at Acorns, and in the love and support his family continues to receive.

"Our biggest fear is that Ezra will be forgotten. But when Acorns came in, it was such a relief, it felt like someone was saying, ‘He is important, we will remember him and help you remember him, too’.

“Our family has been through a soul-destroying thing. Navigating your way through it feels almost impossible. But Acorns knew what they were doing, and we trusted that. Acorns is a guiding light. Without their guidance, we'd be still floundering around in the dark.”

Every family deserves special moments together – moments of comfort, joy and love that stay with you forever. But when a child’s life is short, every hug and every smile is even more precious.

This Christmas, you can help Acorns Children’s Hospice in the Black Country give more families like Ezra’s the gift of time to make every moment count.

Donate to Ezra’s Appeal today and help families across Walsall create memories they never thought possible, surrounded by the care and support they need. 

Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families. 

In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. 

Acorns needs around £35,000 each day to provide its children’s hospice care, with more than 70% of that amount coming from generous donations and fundraising by the local community.

Donate to Ezra’s Appeal today by visiting acorns.org.uk/ezra