A St Albans mother of a child with an ultra-rare genetic condition is helping to help create a ground-breaking nursing position devoted to children with undiagnosed diseases.

Renata Blower is working with Roald Dahl’s Marvellous Children’s Charity to create a position for a nurse who will be based at the Great Ormond Street Children’s Hospital (GOSH), where many children with Syndromes Without A Name (SWAN) are treated.

Eight-year-old Dominic Blower’s condition is highly complex and he can spend months at a time in GOSH.

His mum, Renata, also discovered that her two older children have the same undiagnosed condition, but a less severe version.

It was Renata’s experiences when Dominic was a baby that started her one-woman campaign to make sure that no other families had to go through what she had.

She said: "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 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 realised that children with undiagnosed conditions like Dominic were missing out on a specialist nurse to oversee their care such as those assigned to known conditions such as diabetes or epilepsy.

The Roald Dahl SWAN specialist nurse is thought to be the first of its kind in the world to specifically to support undiagnosed children.

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.