The Daisy Garland
The Daisy Garland
The Daisy Garland is a family run, national children’s charity, set up in 2004 in memory of our daughter Daisy, to offer help and support to children with drug-resistant epilepsy and their families.
There are 60,000 children in the UK with epilepsy, most of them will have their condition controlled with medication and are able to lead full lives. However, more than 18,000 of these children suffer from drug-resistant epilepsy where they remain on medication and suffer an array of nasty drug side-effects without seizure control. In some cases children can have hundreds of seizures a day. This puts them at risk of permanent brain damage, global developmental delay, psychological abnormalities and SUDEP (sudden unexpected death in epilepsy patients). Drug resistant epilepsy is a condition that shortens and destroys lives. Our mission is to maximize the quality of life for these children. Our precious daughter Daisy suffered with severe myoclonic epilepsy and she tragically died from SUDEP at 6 years of age.
We offer support to children with drug resistant epilepsy and their families through three key services: family support and information; the provision of night-time breathing monitors to help prevent SUDEP; and through our flagship programme providing access to ketogenic dietitians. The ketogenic diet is essential in the fight against drug-resistant epilepsy as it is proven to give children the chance of controlling their seizures where drugs fail. The ketogenic diet is not widely available across the UK and we are working hard to try to change this and to allow all children with drug-resistant epilepsy the opportunity to try this amazing drug-free treatment.
The Daisy Garland aims to:
- To raise awareness about childhood epilepsy
- To fund specially trained ketogenic dietitians to work within the NHS country-wide, allowing other children like Daisy to benefit from this drug-free treathment
- To provide active support for parents/carers of children diagnosed with epilepsy
- To provide grants for night-time breathing monitors to children at risk of SUDEP (sudden unexpected death in epilepsy patients)
Established: September 2004
Registered Charity Number: 1106530
Phone number: 01803847999
Address: 2 Stoyle House 7 South Street Totnes, Devon TQ9 5PRView charity accounts on the Charity Commission website