Whilst most people will know Roald Dahl for his amazing writing skills, his incredible life was sadly affected by serious illness, tragedy and loss. It was his personal experiences of illness – of his own and his close family – which spurred Roald Dahl to help seriously ill children and their families.
Roald Dahl believed in taking practical steps to improve the lives of those around him. His creativity and determination even helped to develop pioneering new medical treatments such as the Wade-Dahl-Till valve. This device was used to help thousands of children with hydrocephalus. Roald Dahl also generously gave his time and money to help seriously ill children and their families, including many he never met.
Roald Dahl’s Marvellous Children’s Charity continues this part of Roald Dahl’s legacy.
The charity was set up in memory of Roald Dahl (originally as the Roald Dahl Foundation) by his widow Felicity, shortly after his death in 1990.
The charity rebranded from the Roald Dahl Foundation to Roald Dahl’s Marvellous Children’s Charity on 1 November 2010.
Up until 2013, the Charity focussed upon supporting children with specific brain and blood conditions. The charity also helped to improve children’s literacy until 2009.
Over 2012 and 2013 the Charity undertook a strategic review of its aims and activities, so that the charity now focuses on all serious illnesses, not just brain and blood disorders.
For families who have children diagnosed with epilepsy, the charity can be a huge support in more ways than one.
Roald Dahl Epilepsy Nurses
Roald Dahl nurses are highly trained, senior professionals who can ‘make things happen’ both within the hospital and beyond. They can advise on a whole range of medical, emotional and social issues. They support families by attending appointments and helping support them with gaining evidence for their consultant and helping assist families understand the treatment and care available to them. Roald Dahl nurses care for in excess of 21,000 seriously ill children and their families at any one time and there are currently 75 Roald Dahl specialist nurses in the UK, across Scotland, Wales, Northern Ireland and England.
Kate from PulseGuard has been fortunate enough to meet with many of the nurses accross the UK and hear about the amazing work they carry out and the equipment that the Charity has kindly funded for them to improve the lives of families suffering with epilepsy. On a recent visit to Bournemouth the nurses told us about the home telemetry EEG system’s they had been funded, so that children can have an EEG done within the comfort of their own home and hopefully acheive better results than being in a foreign hospital enviroment which for many can stress to the children and affect the EEG results as well as adding pressure to parents. (for a full list of where Roald Dahl Nurses are located in the UK and how to apply for one please click on the link https://www.roalddahl.com/charity/nurses/about-roald-dahl-nurses/list-of-roald-dahl-specialist-nurses)
Roald Dahl Grants
Other ways Roald Dahl’s Marvellous Children’s Charity helps families living with epilspsy is through their grant scheme. This has allowed many families accross the UK like Suzy Rigby fund a PulseGuard system.
” My son has extremely complex epilepsy and suffers around 300 seizures a day. Nights and the risk of SUDEP have always been a fear, so we were getting very little sleep which was making it hard to function and care for him well in the daytimes. I also walked in one morning to get him up and ready for school to find him mid-seizure with no idea how long the seizure had been going on for. Our epilepsy nurse suggested applying for an alarm via Roald Dahl’s marvellous children’s charity. We researched different seizure alarms and the vast majority only picked up one seizure type. We chose pulseguard after research and speaking to other parents using it. Our epilepsy nurse applied to the charity with us and brilliantly they agreed to fund the initial cost and first 18 months of the pulseguard. This is a cost we would have really struggled to meet otherwise. Since receiving it, we are sleeping so much better knowing if anything happens we will be alarmed and can assist him, rather than the fear of missing serious and potentially life threatening seizures in the night. “Suzy Rigby
But whilst many may think that Roald Dahl’s Marvellous Children’s Charity is a huge charity that has buckets of endless funds, they are in fact still hugely reliant on the generosity of public donations and fundraising events, to enable them to continue their wonderful work and help even more families.
If you would like to support Roald Dahls Marvellous Children’s Charity ongoing work with a donation or a fundraising event, please click on the link to go to the website’s donation page https://www.roalddahl.com/charity/donate
or head over to their facebook page https://www.facebook.com/roalddahlcharity/