'He was a wonderful character' - Loving father pays tribute to 'little star' Alfie who had end-of-life care at Acorns Hospice

Alfie’s nursery was painted, his new cot was ready, and first-time dad Paul ecstatically phoned around the family with the joyous news of his son’s birth. Despite Alfie being born blue, nurses said it was nothing to worry about and he was taken as a precaution for neonatal care.

“I was so proud, he was moving around and kicking and I remember saying excitedly to my wife Vickie: ‘Look he’s going to be a footballer’,” Paul recalls.

Heartbreakingly, Alfie wasn’t just wriggling and stretching – he was, in fact, having a seizure.

“That’s when the walls closed in,” Paul said. “You’re taken into that quiet room, and the door is closed behind you, and they told us Alfie had suffered permanent brain damage during labour.

“We were heartbroken - destroyed. We’d never experienced such a high, and then four hours later, we have never experienced such a crushing low. It’s a day we’ll never, ever forget.”

The family is telling their story and remembering Alfie’s life as part of Celebrate Your Star – a moving, festive campaign from Acorns Children’s Hospice which invites people to pay tribute to much-missed family members by dedicating a star in their memory and making a donation towards the charity’s vital care for seriously ill children.

In return, a beautiful star keepsake will be sent to their home, and another hung on trees at special festive events across the region on 6th and 7th December, to which everyone is invited to attend.

Alfie fought against the odds and after three weeks in hospital was discharged. He was later diagnosed with Hypoxic-Ischemic Encephalopathy, a term for a brain injury that happens when it does not receive enough blood or oxygen during birth.

Despite having multiple complex medical needs, Alfie was given unwavering love and around-the-clock care he needed at home. It would be six years before he and his family visited Acorns Children’s Hospice for the first time.

Paul said: “We’d been aware of Acorns for many years, but it isn’t what people expect. Hospices aren’t just a place for people to die, they’re very much a place for people to live.”

He added: “When I walked through the doors of Acorns, everything was bright, people were so friendly, and nothing was too much trouble. For the first time in our lives, we were able to leave Alfie in the care of someone else. They were a saviour to us.

“They put us at ease very quickly and the staff were amazing - and they still are.”

Alfie had regular stays at Acorns and his family have very happy memories of their visits, taking part in many joyful activities, including Christmas-themed events.

At the same time the family could rely on Acorns expert children’s nurses, health care assistants, tailored medical care, rehabilitative respite, and a range of specialist therapies.

“We had very special times for many years at Acorns,” Paul said. “Although Alfie couldn’t talk, you knew exactly how he was feeling. When he was happy he had a big, beautiful smile.

“He was a wonderful character an in between the difficult moments, he brought a lot of joy to a lot of people and he was smart too.”

Sadly, just days after Alfie’s 16^th birthday he became critically ill and he was transferred to Acorns for end-of-life care. After his death, Alfie’s memory has continued to live on with a JustGiving page, and through the charity that family and friends had earlier set up in his name in 2009 called the Friends of Alfie Johnson. Together the family has raised more than £38,000 for Acorns.

Paul said: “Christmas is a special time, and we always set a place for Alfie at the table. Things will never be the same, and you never get over losing a child, but there’s so much of Alfie’s life to celebrate.

“Everyone who’d ever met him, and anyone who had the pleasure of knowing him, will remember his smile. His smile will stay with us forever. Alfie is a star who still shines.”

This Christmas, the family will continue to remember Alfie’s bright shining light through Acorns Celebrate Your Star, kindly being sponsored by award-winning law firm Irwin Mitchell.

Ben Gilchrist, In Memory Manager at Acorns Children’s Hospice, said: “By dedicating a star you will help give the children and families who use Acorns invaluable memories throughout the festive season and into the New Year and to keep forever.”

He added: “Together, our galaxy of stars will help give the children and families who use Acorns magical moments throughout Christmas and into 2026. When you choose to Celebrate Your Star your gift will be a light in the darkness.”

For further details about Celebrate Your Star and how you can celebrate the memory of a loved one visit www.acorns.org.uk/star

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. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.

This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.

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.