Caring for Finley

Four years ago, proud big brother Danny (aged 3) and his parents were thrilled to welcome baby Finley home in time for Christmas. Born with an as-yet undiagnosed genetic condition, he’d spent his first three weeks in hospital. Mum Lauren explains…


“The community natal nurses gave us lots of support in those early weeks,” recalls Lauren, “and they referred us to Rennie Grove. We first met one of the charity’s children’s nurses, Jane, in January 2019. It’s brilliant to have Jane and her colleagues just a phone call away. Finley has to see a handful of specialists and the Rennie Grove children’s nurses pull everything together, keeping all the healthcare professionals in touch and up to date.”

In March 2019, just three months old, Finley was diagnosed with Shinzel Giedeon syndrome, an extremely rare condition that affects fewer than 10 people in the UK. “For Finley it’s meant a huge global delay, daily seizures and sight and hearing impairments,” explains Lauren. “He can’t talk, sit or walk and he has very little voluntary movement. He’s PEG-fed, via a tube into his stomach.

Lauren says they were fortunate in some ways to get a diagnosis so quickly. But she admits it was 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 last four years, that’s included weekly visits from Jane, who has the specialist nursing knowledge and the rapport with Finley to simply take over and see to all his complex needs. It means I can spend quality time with Danny.”


Finley’s family have also benefited from group social events organised for families of children receiving care from the Children’s Service. “There were trips to the zoo, soft play, and a farm visit,” Lauren enthuses. “Activities kids love, but that can be hard to do with a severely disabled child. Having the specialist team on hand gave us confidence and that extra support. Danny loved it, and we found it so helpful to meet other parents in a similar situation.”

More recently, both boys have enjoyed visits from the charity’s play specialist, Karen, who brings a magical hour of sensory stories, music and light into families’ homes.


“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,” says Lauren.


The Pepper Foundation can only help to fund this vital nursing service with the support of our community. Please consider donating to the Pepper Foundation today to help more children like Jess who are receiving Hospice at Home care. Thank you.