Will (14) who is cared for by Roald Dahl Specialist Epilepsy Nurse, Kat, has won the first-ever Rotary Young Citizen Sporting Hero Award. A talented sailor Will has been presented with this prestigious award for battling against the odds to take part in sailing championships across the world despite collapsing with a haemorrhagic stroke last year and being diagnosed with a Cavernoma and epilepsy.
Will is also being recognised for fundraising for Roald Dahl Marvellous Children’s Charity who provided him with his Roald Dahl Specialist Epilepsy Nurse. Kat has helped Will find innovative ways to sail again despite doctors initially telling him that he would never sail again. We caught up with Will’s mum, Cherie to find out more about Will’s story and how his Roald Dahl Nurse has helped him and the family as a whole.
Will and his Roald Dahl Nurse, Kat
What impact has Will’s diagnosis had on the family? “Our world changed unrecognisably when he suffered the bleed. At the flip of a switch we went from having an active, able, vibrant child to one who struggles with tiredness, processing issues, lethargy, emotional instability, forgetfulness, all the things that come with a brain injury. The epilepsy diagnosis has been particularly difficult. Managing constantly changing drug regimes, the unpredictability of seizures, the impact of the drug regime and most of all, the loss of his blossoming independence. At 12 years old, he was just finding his feet and enjoying his path to being a teenager. The biggest challenge around Will’s condition is that he has a ‘hidden disability’. People look at him and make all sorts of assumptions and comments. His diagnosis is also very unusual and that in itself can be a difficulty. You have no idea how many times we’ve had to present at hospital after an episode and have been met by a medical professional with a google print out of Cavernoma basics!”
How has Will dealt with his condition so far? “The drugs have a massive impact on Will and his epilepsy makes his social life very prohibitive. Initially he was devastated, isolated himself, refused to recognise his diagnosis and didn’t want to face friends and school. However, over the last seven months since this happened, with the help of counselling and the amazing support and guidance of our Roald Dahl Nurse, Kat, he is learning to live the ‘new norm’.”
How has your Roald Dahl Nurse, Kat helped you and Will cope with these challenges? “How hasn’t she? One minute we were in intensive care and the next on our own back home with a list as long as your arm of specialist appointments and interventions for which we had no clue. It felt like having a newborn. Then along came Kat, armed with leaflets, great advice and more importantly, empathy, understanding and ridiculously positive outlook. Since then she has been pivotal, our lighthouse in the dark times, our NHS warrior, our medical dictionary, our sounding board, listening ear, sympathetic smile and ridiculous teller of shockingly bad jokes!”
Did Will’s diagnosis impact his sailing – if so how? “Absolutely, most of the medical professionals went into meltdown about the idea of him setting foot in his boat again. They were sympathetic, but unable to think outside of the box. Can you imagine having this diagnosis and then saying "oh and everything you love and live for has to stop as well.”? He was devastated and as parents, we were really concerned about how this would impact his mental health.”
How did your Roald Dahl Nurse, Kat help Will continue sailing? “Kat is just so solution focussed. As Will sat in front of her in tears, devastated, on her first ever home visit, she made it her priority to investigate further. It was clear that she saw this as a barrier to his recovery and worked with the family to approach both medical and sailing professionals and change the narrative. She stopped nowhere and even wrote to the RS World Sailing Committee, challenging them to allow him to compete at the World Championships in Sweden, she wasn't going to take no for an answer! Since then she worked with the sailing community and Sailability to ensure he is able to access sailing safely and equally. She rocks!”
How would you feel if you didn’t have your Roald Dahl Nurse? “Lost. I can’t even begin to tell you. When all you have is google, life can be very scary. I have cried so much and been lost. Kat found us and continues to guide us through the sometimes terrifying and confusing maze.”
What would you say to the people who have donated to Roald Dahl’s Marvellous Children’s Charity and helped fund your Roald Dahl Nurse? “Thank you, thank you, thank you. The work these nurses do cannot be quantified. Whilst every other professional ticks off their 10 minute appointments in the clinic, our Roald Dahl Nurse is almost omnipresent. She’s at home laughing with Will whilst talking about practicalities, she’s visiting him when he’s on the ward, she’s calling just to check in on the family, she’s just amazing and so are you for allowing this to happen through your donation!“
Every seriously ill child deserves a Roald Dahl Nurse. Please make that happen and donate today: www.roalddahl.com/donate