Jacob's Story

Nine-year-old Jacob loves elephants and going to the park. He also enjoys sensory play and gaming on his iPad. Jacob’s condition is undiagnosed, however his symptoms include congenital isolated bulbar palsy, recurrent chest infections, and he is prone to pseudomonas in his chest.  He is fed by gastrostomy due to an unsafe swallow and has a cough assist machine due to an ineffective cough.  He also has autism and rare jaw condition coronoid hyperplasia, for which he’s awaiting surgery.  Jacob’s mum Becky explains, “When Jacob was born, he didn’t cry, and he wouldn’t feed at all.  I knew something wasn’t right, then he went blue and was rushed to NICU.  After a week they couldn’t find what was going on, so we went to hospital where Jacob had an MRI, ENT testing, and saw neurology and various teams.  They had no answers; we were told he was a mystery.”  Becky continues, “The neurologist said it will be a question of watching and waiting to see how he progresses. It’s really hard as a parent, as you want to know what you’re dealing with and, when you go into hospital and people ask for his diagnosis, you have to say he doesn’t have one and it frightens them, and it frightens you.  When a child is undiagnosed with complex needs, they’re questioning all the time what to do.” 

Meeting their Roald Dahl Nurse Becky, Jacob and the family are supported by Roald Dahl Children with Medical Complexity (CMC) Nurse Specialists Grace and Sarah. Becky says, “In 2023, we met our Roald Dahl Nurse to speak about how she could assist us with Jacob’s needs.  Taking Jacob into hospital is very stressful and the Roald Dahl Nurse team have given us as a family has been amazing.  I would dread calling to say I need to bring Jacob in, now I ring Lister and they meet us at A&E." Becky really appreciates the support that Sarah and Grace provide for the family, as she explains, “They will advocate what we are saying as parents, and they listen to them and proceed with what they suggest. The Roald Dahl Nurses want to work with you to get the best care for Jacob.  It’s nice to have somebody on your side and Sarah and Grace are great advocates for us as complex medical parents.”  Becky continues, “They go completely out of their way to try and help. Grace and Sarah's care goes beyond Jacob alone, as Becky describes, “Jacob was on the ward for four days and childcare is difficult, so we took the other children.  The nurses are amazing with them and would play with them and help with them while we were dealing with Jacob.  The Roald Dahl Nurses are so understanding and caring towards us as a whole family.  They are a shoulder to cry on and a friendly face who listens and always works with us as parents; an absolute godsend.  When you’re a complex medical parent, everything’s a fight, so having someone on your side makes such a big difference.”  Roald Dahl Nurses are established by Roald Dahl’s Marvellous Children’s Charity.  The specialist care the Roald Dahl Nurses provide for Jacob and Becky, and other families like them, is only possible thanks to the generous support of the charity’s donors.  Becky says, “That extra support means so much to us as a family.  When you’re fighting battles every day, to have someone to help you is a massive relief.  A lot of small charities get overlooked, but it’s the small charities that do the biggest things for parents.  It’s a lifeline.  They are dedicated and caring, and we appreciate everything because if we didn’t have them, I don’t know what I’d do.  We don’t feel as helpless as we used to, we walk in confidently now knowing that Jacob is going to get the correct care.”  There are currently over 250 Roald Dahl Nurses in NHS Trusts across the UK so far, as part of its 35th Anniversary the charity has just launched a fundraising campaign to establish more marvellous nurses to meet a growing demand.