Almost seven years on from her death aged just six months old, Evie Johnston's family have now raised more than £500,000 in her memory to help other children facing serious medical conditions and their families.
Set up by parents Jill and Greg, Team Evie works to raise money to support families who find themselves in the terrifying situation they did in 2015 - when Evie spent much of her life seriously ill at the RVI in Newcastle before dying after suffering heart complications.
Since Evie's death, those who loved her have channelled their energy into the charity - and into making sure her story, and her personality, lives on.
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"We are incredibly proud," Greg told ChronicleLive . "What we've achieved is something we don't often stop to reflect on. We are always so focused on what we're going to do next and how we can do more.
"We don't stop much - though of course the pandemic forced us to do that. It's incredibly fulfilling to think how many people we have been able to help in Evie's name."
Greg said that the focus had always been on moving forward. "When Evie died we were so concerned straight away with what we could do to make sure that her impact on the world was as positive as possible.
"We wanted every conversation we have about her to be a positive one."
Greg added that medics at the the hospitals - which include the RVI, the QE in Gateshead and a number of others in Cumbria where the family is based - "just need to ask" for any support or kit they may need.
One of the initiatives Team Evie had been able to help with involved providing iPads with special training resources allowing medical staff to simulate emergency situations.
Greg said he was proud that helping with this had led to staff identifying a procedural risk - that two drugs sounded similar and it was too easy under pressure for staff to potentially select the wrong one - without involving patients.
And he said that had saved lives.
He added that his own family's experience of life in hospital with a sick child meant they had insight into the support other families need.
He said: "We provide parent bags with all a family needs to get them through the first few days in hospital when they might be many miles from home.
"This family's little girl was not well at all - she was being sick and her mum thought it wouldn't be possible for her to cuddle the little girl because she couldn't tie her hair up. But the dad had one of our bags and open and there's a bobble - so mum could hold her daughter.
"That makes an incredible difference to a child."
Over the years, Team Evie's support has also included funding exciting sensory devices to stimulate children in hospital and helping the staff who work so hard to treat poorly children.
Greg added that the charity was still channelling Evie's positive spirit, despite the pandemic having made life difficult for the charitable sector as a whole.
"Through Evie’s inspiration, and by maximizing the relationships we have with the medical professionals we work with, we have been able to establish projects and services that have helped thousands of families and saved children’s lives," he said.
"When we started fundraising our initial aims were to make sure that Evie’s impact on the world was a positive one and to help as many families as we could. To look at what we have achieved in Evie’s name so far makes us incredibly proud.
“The pandemic has hit us hard, as with all charities, but our motto inspired by how Evie lived her life is 'always moving forwards', something which we will continue to do as we now aim for the £1million mark and to develop more exciting projects and ideas to help and support thousands more children and their families across our region."
To find out more about Team Evie or the charity's fundraising events - which include having runners take part in the Great North Run - visit teamevie.org/.
