Dixie from Newark shares the story of Roald Dahl’s nurses through her Going Solo fundraising efforts

Seven-year-old Dixie has walked more than 200,000 steps to help fund more children’s nurses in the NHS, after suffering a severe crisis earlier this year.

Dixie, from Newark, had her first seizure in April 2022. She has since been supported by specialist nurse Roald Dahl Kirsten Johnson at Sherwood Forest Hospitals.

Roald Dahl specialist nurses are located across the UK in the most needy areas and support seriously ill children and their families.

Dixie, 7, from Newark, spread the word of nurses Roald Dahl.

Epilepsy is the most common long-term neurological condition in children, with around 112,000 children and young people diagnosed with epilepsy in the UK.

Dixie’s mother, Lynne Morley, 45, said: “When Dixie had her first seizure, it was unexpected and a shock to us. Every time Dixie had a fit, I would call Kirsten in tears. Having someone to talk to about what was going on made a huge difference.

“Kirsten still has her professional head with a lot of medical knowledge, but also lets me offload. It’s a lifesaver to have a caring voice on the phone and someone with that much expertise.

Throughout the 200,000 Step Challenge, Dixie has raised money through Facebook to support Roald Dahl’s Marvelous Children’s Charity which helps establish and support new specialist nursing positions across the NHS.

Dixie added: “Kirsten is amazing, amazing, amazing, a million amazing. We call her our special nurse. If I didn’t have Kirsten as a nurse, I would miss not having a special nurse for me. ask if I’m okay. I’d find doctor’s appointments scarier if Kirsten wasn’t around. I took on the challenge of helping other kids because they might need a special nurse too .

Kirsten, who also organized emergency epilepsy training for staff at Dixie’s school, said: “I’m extremely proud of Dixie for fundraising and thinking of others as she goes through itself such a difficult time.”

“It would be great if every child and adolescent with epilepsy could have access to specialist support. Being a Roald Dahl nurse is extremely rewarding.

“It is a real privilege to be able to provide specialist support and care to Dixie and her family, as well as many other critically ill children and families in the area.”

Research has shown that skilled nursing can improve patient safety and health outcomes, as well as provide significant emotional benefits to families. The role of Roald Dahl Nurse includes organizing and coordinating testing, treatment and care in a holistic and individualized manner, to improve quality of life and outcomes for the child or adolescent and their family.

Louise Griew, chief executive of Roald Dahl’s Marvelous Children’s Charity, added: ‘Too many seriously ill children and young people with epilepsy do not have access to a specialist nurse. We want to change that.

“Dixie has been a superstar and we are extremely grateful to her for her fundraising efforts. I encourage other people and businesses in the area to support Dixie’s fundraising and help us create more much-needed specialist nursing positions.

A recent study from Sheffield Hallam University found that Roald Dahl’s specialist nurses, regardless of specialty, location, organization or service orientation, have a “profoundly positive impact” on patients, their families and other stakeholders around them.

To support Dixie’s fundraising challenge, donate at www.roalddahlcharity.org/donate

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