Finlay and Rafferty 's Story

Finlay and Rafferty are cared for by their Roald Dahl Epilepsy Nurse Specialist Lilly. They are adventurous boys who are full of beans. They both love swimming and to be outdoors getting muddy and finding bugs! Finlay is football-mad, while Rafferty likes to explore.  Finlay, aged 7, and Rafferty, aged 4, are brothers who have both been diagnosed with epilepsy. In March 2022, Rafferty’s parents noticed he was having some episodes and they were referred to an epilepsy clinic. His mum Jo says, “We got some support, but nothing major happened, so by November we were discharged with advice and information on what to look out for. Within three weeks Rafferty had an enormous seizure, it was about 30 minutes long, and he just was not coming out of it, so we were blue-lighted to the hospital and admitted.”

Meeting their Roald Dahl Nurse Specialist Lilly

The family originally met their Roald Dahl Nurse Lilly when they were first referred to the epilepsy clinic. At Rafferty’s first appointment following his 30-minute seizure and admission, the family met her again, as Jo describes, “Lilly’s been like my crutch, my go-to that stops me having a breakdown. By May or June, we’d got to a place with Rafferty where his meds had his seizures under control and we were feeling like we’ve got this. Then on the last day of term, Finlay had a huge 20-minute seizure, that resulted in him being blue-lighted to hospital.” Jo continues, “Even though he wasn’t under the team, the first thing I did was ring Lilly and she turned everything on its head for us, in a positive way. His initial referral wasn’t scheduled according to family history, so Lilly spoke to the consultants and got it brought forward two months.  She got everything in order, gave advice over the phone and called me at the end of the day to go through safety stuff and see how she could help.”

Support from their Roald Dahl Nurse Specialist

Lilly’s proactive involvement has made a huge difference for Jo, as she explains, “When Raffy was diagnosed I was signed off work with stress for about 3 weeks because it hit me so hard. Then this happened with Fin, and I think because I knew who I could go to and where to get help, I spoke to work and felt like I could do it, and I always say to Lilly that’s entirely down to her. Our consultants have changed and while they’re both lovely, Lilly is the only consistency we’ve had. It's knowing there's someone there for you, even if you don’t necessarily need them all the time, knowing that someone's got your back and understands.” The family’s Roald Dahl Nurse has also provided support for them at school, as Jo explains, “I had a real panic about the boys going back to school as they’ve never had anyone with epilepsy at the school before. Rafferty was starting school and Fin had left without an epilepsy diagnosis and was going back with one and still having quite frequent seizures. Lilly was right there and asked me to put the school in touch with her, so even the school knows her by name and contacts her by email.” Lilly has also helped Jo’s confidence in allowing the boys to carry on as normally as possible, “Both my boys are so adventurous and want to get stuck into everything and my instinct now is to wrap them up in cotton wool and protect them. Lilly’s really good and said there’s no reason for them to stop doing clubs like football and swimming, we just need to make sure they’re safe. She’s got me thinking about what the people looking after them need to feel equipped.  We need to keep normality and just be prepared for that little fraction of time when it all goes a bit awry.” She goes on, “Finlay’s gone from being petrified and embarrassed about it, to telling people at school and feeling like they’re silly for not knowing about epilepsy, even in the space of two months. It’s made such a difference just getting us to flip our mindset about how we manage it.”

The charity connection

Roald Dahl Nurses are established by Roald Dahl’s Marvellous Children’s Charity. The help and support that Lilly provides for Jo, Finlay and Rafferty, and other families like them, is only possible thanks to the generous support of the charity’s donors. Commenting on the charity, Jo says, “If we didn’t have Lilly, I don’t think we’d be managing particularly well. Mentally I wouldn’t feel strong enough to juggle everything. I think having Lilly is what’s made me think I can still do my job and go out to see friends. Initially, I didn’t want to do that because I was too scared to be away from them. I can’t think of anywhere else you’d get the same support, experience and knowledge. If she was gone, I don’t think as a family we’d be in a good place.” Lilly’s involvement as the family’s Roald Dahl Nurse means so much to Jo and the family, that Jo has now volunteered to run the London Landmarks Half Marathon in 2024 and Finley and Rafferty completed a Santa Dash in December to raise money for Roald Dahl’s Marvellous Children’s Charity. Jo says, “Lilly’s so valuable to us, she has changed how me and my husband can handle this. We just want to raise awareness because when we’ve spoken to people about the charity and its work they haven’t known about it, I guess because they haven’t experienced it.  Lilly has stopped us mentally falling apart, we’ve been able to hold it together and function because she’s been there, so anything we can do to help raise the charity’s profile, we’ll absolutely do.”