Parents of boy with rare degenerative brain disease say they are heartbroken after his death in hospital
A 23-month-old boy with a rare degenerative brain disease who was at the centre of a protracted legal battle has died, his parents have said.
Alfie Evans died at Alder Hey children’s hospital in Liverpool in the early hours of Saturday morning.
Announcing the news on Facebook on Saturday, his parents, Kate James and Thomas Evans, said: “Our baby boy grew his wings tonight at 2:30am. We are heart broken. Thank you everyone for all your support.”
Life support was withdrawn on Monday after a last-ditch appeal to the high court was turned down.
Alfie had been in a semi-vegetative state and scans of his brain had shown that almost all of it had been destroyed. Judges had agreed with doctors that further treatment would be futile and there was no hope of him getting better.
His parents, who are both in their early 20s and from Liverpool, had insisted their son was not in pain or suffering, but lost cases in the high court, court of appeal, supreme court and European court of human rights.
Evans said on Thursday that their lives had been turned upside down by the intense focus his son’s case had received in Britain and around the world.
“Our little family along with Alder Hey has become the centre of attention for many people around the world and it has meant we have not been able to live our lives as we would like,” he said.
The attention and emotion that Alfie’s plight attracted and his parents’ determined public campaign to get the treatment they believed he needed led to high tensions between supporters and staff at Alder Hey.
Hospital managers said they were shocked at the barrage of abuse that came from some quarters when they found themselves “at the centre of a social media storm”. It led Merseyside police to issue a warning over comments being made about the hospital online.
After accepting that their options had been exhausted, Alfie’s parents sought to build bridges with medical staff and pledged to work alongside doctors to give him the dignity and comfort he needed.
Evans said on Thursday: “We ... thank Alder Hey staff at every level for their dignity and professionalism during what must be an incredibly difficult time for them too.
“Together we recognise the strains recent events have put upon us all and we now wish for privacy for everyone concerned.”
In a statement issued on its website, Alder Hey children’s hospital said: “We wish to express our heartfelt sympathy and condolences to Alfie’s family at this extremely distressing time.
“All of us feel deeply for Alfie, Kate, Tom and his whole family and our thoughts are with them. This has been a devastating journey for them and we would ask that their privacy and the privacy of staff at Alder Hey is respected.”
Supporters began to leave floral tributes outside the hospital on Saturday morning, along with balloons, toys, candles and flags.