The perfect world that welcomed Alfie Johnson at his birth was shattered just hours later when doctors delivered a devastating diagnosis. Now, his father Paul is sharing their family's profoundly emotional story to support a poignant festive campaign by Acorns Children's Hospice.
A Joyful Beginning Turns to Heartbreak
First-time father Paul Johnson had excitedly prepared the nursery and made the joyful phone calls to family after his son Alfie was born. Despite the baby being born blue, initial reassurance from nurses suggested it was a minor concern. Paul vividly recalls his pride, watching Alfie move and telling his wife Vickie he thought their son would be a footballer.
Tragically, those movements were not signs of vitality but of seizures. The family's world collapsed when they were taken to a quiet room and informed that Alfie had suffered permanent brain damage during labour. "We were heartbroken - destroyed," Paul said. "We’d never experienced such a high, and then four hours later, we have never experienced such a crushing low."
Finding Light and Support at Acorns
Alfie was diagnosed with Hypoxic-Ischemic Encephalopathy, a brain injury caused by insufficient oxygen during birth. He defied expectations and was discharged after three weeks in hospital, but required complex, round-the-clock care at home. It would be six years before the family first visited Acorns Children's Hospice.
Paul describes the hospice as a revelation, challenging common misconceptions. "Hospices aren’t just a place for people to die, they’re very much a place for people to live," he explained. The bright, friendly environment and amazing staff provided the family with their first opportunity to leave Alfie in someone else's capable care, offering them crucial respite.
Alfie enjoyed regular stays at Acorns, participating in joyful activities including Christmas events, while benefiting from specialist nursing, therapies, and tailored medical support. Paul remembers his son's beautiful, communicative smile, stating he was a wonderful character who brought joy to many.
A Lasting Legacy Through 'Celebrate Your Star'
Sadly, Alfie became critically ill just after his 16th birthday and received end-of-life care at Acorns. His memory lives on through tremendous fundraising efforts. The 'Friends of Alfie Johnson' charity, set up in 2009, and a JustGiving page have collectively raised more than £38,000 for the hospice.
The family is now championing Acorns' 'Celebrate Your Star' campaign. Running on the 6th and 7th of December, it invites the public to dedicate a star in memory of a loved one with a donation. In return, donors receive a star keepsake and see another hung on trees at special festive events across the West Midlands.
"Christmas is a special time, and we always set a place for Alfie at the table," Paul said. "His smile will stay with us forever. Alfie is a star who still shines." The campaign is kindly sponsored by award-winning law firm Irwin Mitchell.
Ben Gilchrist, In Memory Manager at Acorns, emphasised the campaign's impact: "Together, our galaxy of stars will help give the children and families who use Acorns magical moments throughout Christmas and into 2026."
Acorns Children's Hospice provides vital palliative care for babies, children and young people with life-limiting conditions across the West Midlands from its three hospices in Birmingham, Walsall and Worcester. The charity needs approximately £35,000 every day to operate, with over 70% of funds coming from donations.
To learn more about the Celebrate Your Star campaign and how to dedicate a star in memory of a loved one, visit www.acorns.org.uk/star.
