This is a Rennie Grove archive news story.
Finley, who was born with Schinzel-Giedion syndrome, was cared for by our Children’s Hospice at Home team before he sadly died in October 2022.
Finley’s mum, Lauren, says:
“Shinzel Giedeon syndrome is an extremely rare condition that affects fewer than 10 people in the UK. When Finley was first diagnosed, at just three months old, we were fortunate in some ways to have a diagnosis so quickly, but it was also very hard because so little was known about the condition.
“One of the first things Rennie Grove helped us with was researching and understanding more about the syndrome, what it might mean for Finley, and how best they could support us as a family.
“Over the next four years Rennie Grove supported us with regular nurse visits at home as well as play specialist activities and special group social events. It was so reassuring to have continuous support from a team that has specialist nursing knowledge and could see to all of Finley’s complex needs.
“The Rennie Grove Children’s Hospice at Home service lightens the load – you know you can call whenever you need them and they’re always there for you.”
After seeing the difference that the charity’s support had made to Lauren and her family, ‘Move, Walk, Run’ founder, Louise Wright, decided to set up a collective fundraising challenge so the group’s members could give something back to the charity. 50 members have now signed up to join the challenge – with around 10 tackling the whole marathon distance, over 20 completing a half marathon and the rest covering shorter distances.
“We all saw the huge difference that Rennie Grove’s support made to Lauren and her family so we knew we wanted to do something big to fundraise. Many of our members are new or relatively new to running so to set ourselves the goal of completing a marathon or half marathon was a huge challenge. We’re training together and spurring each other on. I can’t wait for race day to do something amazing together in memory of Finley, and for our members to experience the sense of accomplishment that comes from working so hard towards a goal.”
Tracey Hancock, Director of Fundraising at Rennie Grove Hospice Care, says:
“It’s wonderful to see the community around Lauren pulling together to fundraise for us in memory of Finley. Every penny raised by the team will be used to ensure that other local families can access vital care and support if they or a loved one are living with a progressive life-limiting illness. I’d like to wish the whole team the best of luck for race day!”
The marathon will take place on Saturday 20 May, starting from Thame and ending in Kimble, with those tackling shorter routes joining along the way. To sponsor the team, visit https://www.justgiving.com/fundraising/move-walk-run?fbclid=IwAR2sUDxiMlZEseykr40SjM51sCBiWB1_DCgNmW79SCbjRx4OExtLa_gnyjs