Jo Anderson and her son Finlay were inspired by the dedicated care they have received from their Roald Dahl nurse specialist, Lilly Gyergyak.
This was after Finlay, seven, and his younger brother Rafferty, four, were diagnosed with epilepsy last year.
Jo has signed up to run the London Landmarks Half Marathon in April next year, while Finlay will be running the local Santa Fun Run later this month.
Jo said: “When Finlay realised that Lilly was part of a charity, he wanted to support so that we, and other children, can receive help when they need it.”
Last year, Rafferty experienced a major epileptic seizure, which lasted 30 minutes and resulted in him going to hospital. By the summer his epilepsy was under control with medication and then, on the last day of the school term, Finlay had a huge 20-minute seizure and he too went to hospital.
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Jo said: “When Raffy was diagnosed I was signed off work with stress because it hit me so hard. When it happened with Fin, I knew who I could go to, where to get help and felt like I could do it, and I always say that’s entirely down to Lilly.”
Roald Dahl specialist nurse Lilly is based at Southampton Children’s Hospital and supports children, and young people living with epilepsy.
Lilly said: “I feel overwhelmed by the praise I’ve received from Jo, Jack, Finlay and Rafferty. Hearing how my support can have such a positive impact is really rewarding.
“Working in my role you really appreciate just how distressing and difficult living with epilepsy can be not only for the individual, but also their family. The condition can be complex and problems include difficulty in controlling seizures but there are also wider issues such as accessing education or for the young person to suddenly feel isolated and worried about not having a ‘normal future’ – for some this is just the tip of the impact the condition can have.
“It’s so wonderful to hear the family are passionate about raising more awareness to help support the charity further. Wouldn’t it be marvellous if there were more Roald Dahl Nurse Specialists to help support more local children, families and young people affected by this chronic illness.”
Roald Dahl’s Marvellous Children’s Charity raises funds to establish specialist nurses to care for children living with some of the most serious and complex health conditions across the UK. The dedication and expertise of Roald Dahl Nurses reduce A&E visits, hospital admissions and consultant appointments, co-ordinating care and providing a vital lifeline to the whole family.
To donate to Fin’s Santa Dash visit https://www.justgiving.com/page/joanna-blunden-1698250718582
To donate to Jo’s half marathon visit https://www.justgiving.com/fundraising/JoleyAnderson.
