The Charity has today announced plans to create the world’s first specialist Roald Dahl nurse for children with ultra-rare undiagnosed conditions
To mark Undiagnosed Children’s Day, Roald Dahl’s Marvellous Children’s Charity is pleased to announce a new nurse post for children with undiagnosed conditions at Great Ormond Street Hospital (GOSH). It is believed that this is the first specialist nurse for undiagnosed conditions in the world.
The charity has been working closely with Renata, mum to Dominic (pictured together above) who has an ultra-rare condition to create this special nurse post for children with Syndromes Without A Name (SWAN).
Renata had a really difficult time when Dominic was born and she has been working tirelessly to make sure that other families don’t have to go through what she did.
“It was the loneliest and scariest experience of my life. No one could tell me if my baby was going to live or die, they couldn’t even tell me what was wrong with him. Doctors would come in and out of our little hospital room and each time I was waiting for devastating news. It was awful, like being stuck in a living nightmare with no one to turn to for support. It was even harder when we went home.”
She soon realised that children with undiagnosed conditions like Dominic were missing out on a specialist nurse to oversee their care and spent many years trying to raise awareness of the difficulties that families face.
In 2014, Renata made a video featuring their family to mark Undiagnosed Children’s Day. When Roald Dahl Marvellous Children’s Charity left a Facebook comment on the video, she discovered the charity had already funded 50 specialist nurses for diagnosed children. She contacted them immediately.
Since then, the Charity and Renata have been working together to create this nurse post.
Richard Piper, CEO of Roald Dahl's Marvellous Children's Charity said, “By creating this unique Roald Dahl SWAN Nurse post – and showing the difference it makes - we are championing these thousands of overlooked children and families, and helping to create genuinely child-centred care.”
Both the Charity and Renata are extremely excited about this new nurse and how it will help to transform the lives of families.
Renata said: “I can’t wait to break the news to the families who are part of the SWAN UK online community. It’s perfect that our announcement coincides with Undiagnosed Children’s Day. This is the first step to ensuring proper support for very vulnerable families who have children with some of the most complex medical needs and disabilities in the country. The Roald Dahl SWAN nurse will be a lifeline to many families. I hope this is just the start and we will be able to roll this out to other specialist children’s hospitals very soon.”
The new role will be created in collaboration with children and their families with the Centre for Outcomes and Experience Research into Children’s Health, Illness and Disability at Great Ormond Street Hospital over the next few months. It is hoped the new post will join the team by early next year.
This new role has been funded by Roald Dahl’s Marvellous Children’s Charity and St James’s Place Foundation.