When David and Mary Taylor's baby son Jude died at just a few weeks old, amid the devastating heartbreak they found a glimmer of solace at a Norfolk hospice.
Unable to even hold their desperately sick son after he underwent heart surgery at five days old, East Anglia's Children's Hospices (EACH) at Quidenham, near Diss gave the Taylors a haven where they could say goodbye to their brave little boy.
Now the Mulbarton family want to help EACH in its bid to raise £10m to build a new hospice, and they are appealing for people in the county to dig deep in memory of baby Jude.
Dad David, an Anglian Water technician, said: 'It means so much to us that we had that chance to say goodbye to Jude properly.'
The 36-year-old added: 'The new hospice is going to be so much bigger and support more parents who are going though this.'
The couple, who live Bromedale Avenue with their five-year-old son Ethan, were first told something was wrong when Mrs Taylor had her 20-week scan while pregnant with Jude.
They were referred to Great Ormond Street Hospital in London, where specialists explained that Jude had hypoplastic left heart syndrome, which meant he essentially had half a heart, and he may not even survive to be born.
The devastated couple were told they could either terminate the pregnancy, or once he was born, allow Jude to die naturally or attempt to operate.
Mrs Taylor, a sales assistant for John Lewis, said: 'Our whole world was turned upside down. We were numb, we didn't know what to do, but we decided to go ahead and give him a chance.'
Jude was born by caesarean section on April 2, 2014, at the Norfolk and Norwich University Hospital, where the Taylors' described the care they received as 'second to none'.
While Mrs Taylor recovered, Mr Taylor and the newborn were whisked to Great Ormond Street Hospital (GOSH), where Jude underwent heart surgery on April 7.
The surgeon had to leave Jude's chest open, due to his heart swelling, but when he attempted to close the wound a week later Jude crashed and after had to be put on an extracorporeal membrane oxygenation (ECMO) machine which is similar to a heart-lung bypass machine and is used for babies and children with severe heart or lung failure.
Mr Taylor said: 'The surgeon told us he had only seen three babies come off the ECMO machine in his career, so we were getting ready to say goodbye to him.
'But he came off it and it was an amazing feeling.'
The surgeon started to close the chest wound slowly over a period of days, carrying out the procedure at Jude's bedside because he was too ill to be moved. But Jude deteriorated and when it became clear on April 28 that he would not survive, the decision was taken to stop giving him drugs and he died in his mum's arms.
Mr Taylor said: 'Great Ormond Street were amazing, the support was out of this world and we still keep in contact with them.
'Jude was then brought up to Quidenham.
'We didn't want him to go in to a funeral parlour and at Quidenham it was lovely because he was in a children's room.'
Mrs Taylor said: 'It was nice to spend some time with him and we made hand and footprints and they helped us to make a memory box so as Ethan gets older we can look back on that.
'It was three weeks before we could have Jude's funeral and it would have been horrific to have him lying in a mortuary.
'It was nice that we could go and see him at Quidenham and all the staff were amazing.
'They have also helped Ethan with siblings groups and he loves going to their family days.'
Mr Taylor now wants to fundraise for the charities which have supported them over the last year, including raising money for EACH's nook appeal and £17,000 for a mobile x-ray machine for GOSH, and said the support they have had from people in Mulbarton and from Mulbarton Infant School has been tremendous.
He said: 'We want to support the nook appeal because of how EACH supported us and continue to raise funds so they can help other charities.'
Do you have a story about how you have been helped by EACH? Call reporter Kim Briscoe on 01603 772474.
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