To many, Ezra Bear may seem like just a soft, cuddly teddy bear. But for the family of six-year-old Ezra from Cheltenham, this special bear embodies the warmth, joy, and spirit of a boy taken too soon. Ezra Bear is the heart of Ezra’s Appeal, a moving new Christmas campaign launched by Acorns Children’s Hospice, sharing Ezra’s story and the priceless gift of time the hospice gave his family.
Ezra was a lively, cheerful child known for his infectious giggles and affectionate cuddles. His ‘morning song’ of laughter and blowing raspberries brought endless joy to parents John and Suzanne and his brothers, Eli and Ethan. Tragically, at just four months old, Ezra was diagnosed with Zellweger Spectrum Disorder, an extremely rare and life-limiting condition, with only about 500 cases worldwide and just a handful in the UK.
The devastating diagnosis was a “world-ending moment” for his parents. “We walked into the hospital expecting good news and left that same day with the crushing reality that our baby was dying,” John recalls. “We felt abandoned, left with nothing but a bleak information sheet and overwhelming fear.”
READ MORE: Full List of Football Fans Banned Following Cheltenham Brawl
READ MORE: Former Luton Town and Charlton Athletic Goalkeeper Harry Isted Joins Forest Green Rovers
Just 48 hours later, Acorns Children’s Hospice stepped in, offering the family vital support and comfort during their darkest hours. “Acorns wrapped us in a safety net, like a warm hug exactly when we needed it,” John explains. “They told us we weren’t alone, and that made all the difference.”
Through Acorns, the family experienced unforgettable moments together. Quiet cuddles, joyful milestones, magic-filled Christmases—moments they never thought possible. Initially hesitant about hospice care, John and Suzanne soon discovered Acorns was a beacon of hope. “Walking through their doors, we found experts who knew how to care for Ezra and our whole family. They gave us the knowledge, emotional support, and peace of mind we desperately needed.”
Pain relief medication provided by Acorns helped ease Ezra’s suffering, allowing the family to cherish his short but beautiful life. Against all odds, Ezra lived six magical years before passing in July 2022. He remains ‘forever six’ in his family’s hearts.
The hospice also extended support to Ezra’s brothers, continuing to provide sibling services and group activities even after his passing. “While many supports disappeared after Ezra died, Acorns still gives Eli and Ethan a community and memories to hold onto,” John shares.
Ezra’s memory is beautifully preserved through Ezra Bear—a teddy filled with some of his ashes. This bear is a constant comfort during holidays, birthdays, family gatherings, and especially Christmas. “Having this bear to hold is a physical reminder of Ezra’s love, softness, and presence. When you lose your child, you miss holding them. This bear brings us a little closer every day.”
Acorns has helped the family create keepsakes and memories that honor Ezra’s life and sustain them in their grief. “Our greatest fear was that Ezra would be forgotten, but Acorns assured us he is remembered and loved,” says John. “We went through unimaginable pain, but Acorns guided us through the darkness. Without them, we’d still be lost.”
Every family deserves moments of comfort, love, and joy, especially when time is so precious. This Christmas, you can support Ezra’s Appeal and help Acorns Children’s Hospice provide families across Cheltenham and Gloucestershire with the gift of time – time to create lasting memories surrounded by compassionate care.
Acorns Children’s Hospice offers expert palliative care for babies, children, and young people facing life-limiting conditions, and support for their families. Last year, Acorns cared for over 780 children and supported more than 1,000 families in the West Midlands. With 70% of its funding coming from community donations and fundraising, the charity relies on generosity to continue its vital work.
Donate to Ezra’s Appeal and help create precious moments that last a lifetime.