AMY Metcalfe – whose rare genetic disorder sparked massive fundraising by readers of The Press when she was a baby – has died of pneumonia, aged 25.

Her parents have paid tribute to their “inspirational and determined” daughter, who was given only hours to live after being born with Pfeiffer syndrome and underwent more than 50 operations during the first ten years of her life.

Her father Martin, a police officer in York, said: “Amy was an inspiration to all of us. Despite the enormous challenges she faced, she was always smiling and happy.

“Her positivity in the face of adversity rubbed off on everyone who knew her.

“We were incredibly proud of Amy and the courage that she showed, no matter what life threw at her.

“We will miss her terribly and she’s left a huge hole in our lives – but she will continue to inspire us all.”

He thanked staff at Dewsbury Hospital, where Amy died on Monday, for their hard work and support, and also thanked staff at Hollybank Poplars, near Huddersfield, where she lived as an adult, as well as the people who cared for Amy or raised funds for her over the years.

York Press:

Her mother, Tracy Millett, described Amy as a “true angel”, saying: “Throughout her short life she asked for nothing, but appreciated everything, and loved us all unconditionally.”

She added that carers at Hollybank Poplars had been “outstanding” in their care, love and support of her, while Amy’s sister Lucy, 17, thanked staff at Dewsbury Hospital.

Almost a quarter of a century ago, the then Yorkshire Evening Press launched The Amy Appeal, which met with a huge response from readers and raised £24,000 to support her through her disabilities as a child.

It was initially thought she had the one-in-500 million Antley-Bixler syndrome, before it was later discovered she instead had Pfeiffer syndrome, albeit still a very rare condition.

Her family says Amy lived life to the full, loving musicals and Disney films and going to see live bands.

Growing up in York, she attended Applefields and Lidgett Grove schools and was a regular visitor to Martin House Children’s Hospice at Boston Spa.

The family now plans to raise funds for Hollybank Poplars and Martin House in Amy’s memory.

Anyone wishing to donate can do so at https://www.justgiving.com/teams/amymetcalfe

  • Amy’s funeral, planned as a “colourful celebration of her life”, will take place at 10.20am on Monday, January 30, at York Crematorium. Mourners are asked to give donations to The Poplars at Hollybank and to wear bright colours. Men are requested to wear Disney or brightly-coloured ties.