Jacob's Story

Jacob is supported by his Roald Dahl Nurse Grace.  Seven-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 uses a wheelchair for long distances.  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 Grace is Jacob’s Roald Dahl CMC Nurse Specialist.  Becky says, “At the beginning of the year, we met Grace to speak about how she could assist us with Jacob’s needs.  Taking Jacob into hospital is very stressful and the help Grace has 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 I ring Grace and she meets us at A&E. " Becky really appreciates the support that Grace provides for the family, as she explains, “Grace will advocate what we are saying as parents, and they listen to her and proceed with what she suggests.  She’s a massive part now if I have to take him in.   She wants to work with you to get the best care for him.  It’s nice to have somebody on your side and Grace is a great advocate for us as complex medical parents.”  Becky continues, “She goes completely out of her way to try and help.  She’s been helping me to get Jacob’s care plans up to date and came to a clinic appointment to meet the team and understand the level of care needed. She’s taken a lot of pressure away by helping me communicate with them. She also recently arranged a big meeting with all the professionals at our local hospital, the respiratory team, maxillofacial team, A&E sister, ward sister, nursing manager, every person that needed to be there.  She’s seen the challenges we face, so she’s trying to help us liaise with the higher team." Grace’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.  Grace is just amazing with them and would play with them and help with them while we were dealing with Jacob.  She’s just so understanding and caring towards us as a whole family.  She’s a shoulder to cry on and a friendly face who listens and always works with us as parents; she’s 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 help and support that Grace provides 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.  Grace is dedicated and caring, and we appreciate everything because if we didn’t have her now, 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.”