A charity set up by the wife of the children’s author Roald Dahl provides nurses to care for the most seriously ill and disabled children.
Roald Dahl’s Marvellous Children’s Charity provides specialist nurses and support for seriously ill children, but it also provides support for their carers and families.
Roald Dahl Nurses currently care for more than 33,000 seriously ill children, but there are many more who do not receive this vital specialist care.
‘We understand how difficult being diagnosed with a lifelong, complex condition is for a child and their whole family,’ a spokesman for the charity says. ‘It is uncertain, overwhelming, scary and deeply unfair. It can take over your whole life. Navigating this challenging world can be daunting, particularly when an initial diagnosis is made. That is where our marvellous nurses come in – ensuring that children and their families no longer have to brave their illnesses alone.’
Roald Dahl Nurses are trained and dedicated experts in their field. They are a consistent presence in the child’s life, from initial diagnosis through to the child’s transition to adult services.
Their presence reduces A&E visits, hospital admissions and consultant appointments. They also provide emotional support for parents and siblings.
Max, eight, is cared for by his Roald Dahl Nurse Lisa. Max was diagnosed with a GRIN2D-related disorder and epilepsy. GRIN2D is a gene that can cause a range of neurodevelopmental conditions.
Max is unable to walk or talk and is dependent on a tube for feeding. He is also blind and suffers seizures. Max and his foster mum Suzannah are both supported by Lisa. ‘It’s hard to put into words what Lisa means to us,’ says Suzannah. ‘She holds so many things together.’
Lisa noticed that Suzannah was sleeping on the floor of Max’s room at night so he wouldn’t be left alone. She knew this wasn’t sustainable, and helped to get night support for Max, meaning that Suzannah gets much more sleep.
‘Lisa has taken us from a place where we were struggling to a place where we know we are going to be OK,’ says Suzannah.
Felicity Dahl, the second wife of the children’s author and founder of the charity says: ‘Roald always loved to help people, and due to his tragic experiences of family illness, he developed a great respect for nurses.
‘It is remarkable to see how many children we have helped so far, and I am immensely proud of our nurses. However, our work is not done and we are currently trying to raise £1 million to fund eight new Roald Dahl Nurses to care for more of these very special children.’
How to Donate
You can donate online at roalddahlcharity.org, by phone on 01494 890465, and by post to Roald Dahl’s Marvellous Children’s Charity, 17 Chiltern Business Centre, 63-65 Woodside Road, Amersham, HP6 6AA
