Paul Johnson, a father from the Black Country, experienced the most profound emotional rollercoaster the day his first son, Alfie, was born. What began as overwhelming joy quickly turned to heartache when Alfie was diagnosed with a life-limiting brain injury sustained during childbirth.
The Johnson family had prepared lovingly for Alfie’s arrival, painting his nursery and setting up his cot. The early moments after birth felt full of promise—Alfie was moving and kicking, and Paul even joked he might grow up to be a footballer. But the initial excitement faded when Alfie was taken to neonatal care and diagnosed with Hypoxic-Ischemic Encephalopathy, a brain injury caused by insufficient oxygen during birth.
“The walls closed in,” Paul recalls. “You’re taken to a quiet room, the door shuts behind you, and you’re told your child has permanent brain damage. We went from the highest highs to the lowest lows within hours. It was heartbreaking.”
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Despite his medical challenges, Alfie defied the odds. After three weeks in hospital, he was able to come home, where his family provided constant love and care. It wasn’t until six years later they first visited Acorns Children’s Hospice, a place that offered not just medical support but a welcoming environment where families could feel at ease.
Paul, a former photographer, shared how Acorns changed their lives: “Hospices aren’t just for end-of-life care—they’re places to live fully. Walking through Acorns’ doors, the brightness and kindness reassured us. For the first time, we could entrust Alfie’s care to someone else. They were a savior.”
Alfie spent many joyful times at Acorns, joining seasonal events and receiving expert nursing, therapies, and respite care. Despite being non-verbal, Alfie communicated volumes through his infectious smile. “He was a wonderful character,” Paul says, “bringing joy to everyone around him.”
Tragically, soon after his 16th birthday, Alfie became critically ill. He returned to Acorns for end-of-life care and passed away on November 26, 2023. His family honors his memory through the Friends of Alfie Johnson charity, established in 2009, which has raised over £38,000 to support Acorns.
“Christmas will never be the same without Alfie, but we celebrate his life every day,” Paul reflects. “His beautiful smile is unforgettable. Alfie is a star who still shines brightly.”
Sharing their story as part of Acorns’ Celebrate Your Star campaign, the family invites others to commemorate loved ones while supporting vital care for seriously ill children. Each tribute creates a lasting legacy of light and hope for families facing similar journeys.
Acorns Children’s Hospice cares for over 780 children across the West Midlands, providing expert support in hospice centers and the community. The charity relies heavily on donations to sustain its life-changing services, offering comfort and care to families during their most difficult times.