Nathan, a teenager from Warwickshire has been affected by a rare disease since he was born. With the support of his Mum and Roald Dahl rare disease specialist nurses at Birmingham Children's Hospital, he's defying the odds.
Nathan was desperately ill when he was born and has remained seriously ill into his teens. Nathan's internal organs were configured in such a way that he experienced major kidney function problems. He received a kidney transplant at the age of ten, but this has started to fail and he has also had to battle a rare TB-related virus.
With a frail immune system, seemingly small infections can have a big impact on Nathan and his chances of being eligible for a second kidney transplant lessen. Despite these difficulties, Nathan and his family's resilience have helped him to overcome the medical obstacles that are thrown at him. His mum Claire plays a pivotal role in supporting Nathan's care and supporting his siblings.
Claire has also sat on the interview panel for the Roald Dahl Rare Disease Transition Specialist nurse post at Birmingham Children's Hospital. Claire is delighted that Nathan's care is now coordinated by Roald Dahl nurse Janet. She says, "I wanted someone I can trust, someone empathetic who understands what we're going through. You need someone to fight your corner, to coordinate all the departments you have to deal with. It's bad enough having a rare disease and knowing that it's going to lead to more surgery and complications. Having one special person there takes away some of the worry and angst...it makes an immeasurable difference."
With Roald Dahl nurse Janet's support, Nathan has high hopes for the future. He has a vast medical knowledge and aspires to be a pharmacist or radiographer. The family face an uncertain future because of Nathan's health, but with a great deal of optimism and determination, Claire is hoping that Nathan will continue to defy the odds.