Watch our BBC Lifeline Appeal on BBC One, Sunday 26th February at 1.50pm. Our charity appeal is presented by Claudia Winkleman and features some of the marvellous families under the care of a Roald Dahl Nurse Specialist.
In the Appeal we meet Max, Maya, and Emmeline, three children and families who live with complex, lifelong conditions. Join us to hear more about how their Roald Dahl Nurses have helped to make their lives more marvellous.
Please support us by watching and sharing our appeal. Thank you.
Hear from Claudia Winkleman
'I’m incredibly proud to be supporting this appeal for Roald Dahl’s Marvellous Children’s Charity. For over a decade, I’ve been a patron for this wonderful charity and seen first-hand how it transforms the lives of people facing unimaginable circumstances.
The charity truly understands how immensely difficult being diagnosed with a serious and complex illness is for a child and their whole family.
The work these specialist nurses do every day is crucial, but the reality is that we desperately need more of them.'
Max has GRIN2D- related disorder and epilepsy. GRIN2D-related disorders can cause a range of neurodevelopmental conditions, with the symptoms a child experiences and the severity of the disorder varying widely. Max is unable to walk, talk and is dependent on a tube for feeding. He is also registered blind and suffers regular seizures.
Max and foster mum Suzannah are supported by Lisa, their Roald Dahl Nurse. Suzannah says: “It’s hard to put into words what Lisa does, and what Lisa is, to us. She is the foundation that holds so many things together for us.
Suzannah says 'Lisa has taken us from a place where we were very isolated and struggling to get on top of Max's health, to a place where we know we are going to be okay.'
Vikki and Rich's daughter Maya was a healthy little girl until in late 2021 she started feeling unwell.
After tests, Maya was initially diagnosed with sinusitis. However, Maya’s condition continued to deteriorate, and Maya was rushed for brain surgery to save her life.
On the night of the surgery, the family met their Roald Dahl Nurse, Jayne and throughout Maya’s recovery Jayne was on hand to support and reassure the family.
Maya was finally discharged from hospital in December with Jayne becoming the main link with the Neurosurgical team.
Vikki says 'I don’t think I could ever put into words how grateful we are for our Roald Dahl Nurse. We will remain forever grateful for the kindness, support, and guidance that Jayne has provided us.'
When Anna was pregnant with Emmeline, she was told on her 27-week scan that her baby would have a rare condition called Goltz Syndrome.
As the syndrome is so rare (only around 500 known cases in the world) Anna found it difficult to find out more information. During her research, she found a local team of Roald Dahl Rare Disease Nurses and reached out to them via email. The next morning Anna received a phone call from Tina inviting her for a coffee and chat.
Goltz Syndrome involves many different parts of the body and has many different symptoms. Emmeline could have been born blind and deaf and have other serious conditions, including those affecting her heart and kidneys.
Tina gives the family a huge amount of emotional and practical support. Tina also helps co-ordinate appointments and liases with the many professional and healthcare teams involved in Emmeline’s care.