Roald Dahl's Marvellous Children's Charity have created a new role, to help care for young people in Eastern England with neuromuscular disorders
We are delighted to announce that Roald Dahl's Marvellous Children's Charity have funded our first ever children’s specialist neuromuscular nurse. The new Roald Dahl nurse will join Jodi, Sian and Zoya at Addenbrooke’s Hospital in Cambridge and will help to improve the lives of children and young people with neuromuscular conditions in the East of England.
This new nurse will help to fill a gap in the services for children with neuromuscular disorders that so desperately needs filling, as Richard Piper, Roald Dahl's Marvellous Children's Charity CEO explains:
“In the UK, services for paediatric neuromuscular disorders are so patchy that most children will not live beyond their mid 20s, whereas in Denmark they will live nearly twice as long. Children and their families deserve better than this. Our health service can do better than this. We believe that our new Roald Dahl nurse will help this rapidly growing service to be recognized as a Centre of Excellence in the near future.”
Having a child with a rare disorder can be very lonely and tiring but with the help of a Roald Dahl nurse this can all change. They are able to provide specialist information, emotional support and care so that families are not left to cope with their child’s condition alone. The nurse becomes an essential link between families and the hospital.
The new nurse at Addenbrooke’s will be helping children such as Alexis (pictured above with his family). Alexis is five years old and lives in Southwold with his mum and dad and two younger sisters. He was diagnosed with Duchenne muscular dystrophy when he was just six months old.
Unfortunately for him there hasn’t been a hospital close enough that had could help with his specialist condition. This meant t hat Alexis’ family had to travel to Great Ormond Street Hospital in London. As you can imagine the six hour round trip was difficult and exhausting.
Luckily for Alexis, he is now cared for by the Addenbrooke’s new neuromuscular service at Cambridge. Addenbrooke's Hospital is able to offer the same high quality care as Great Ormond Street but without the long journey for Alexis. More good news has come their way in the form of our new Roald Dahl nurse.
Alexis’ parents were thrilled to hear that a Roald Dahl specialist children's nurse will soon be in post. They said:“The new Roald Dahl nurse will be an excellent point of contact for us, especially because Alexis has recently started on a new course treatment and he will need close clinical monitoring.”
Could you be the next Roald Dahl nurse? Addenbrooke's Hospital are recruiting now for this role.