Charity raise £24,000 for NHS epilepsy dietician
THE PARENTS of a young girl who died from a rare form of epilepsy have raised thousands of pounds for a special anti-epilepsy dietician at the hospital where she was treated.
Daisy Garland, the daughter of David and Sara Garland from West Wimbledon, died in her sleep in April 2004 three days after her sixth birthday as a result of SUDEP (sudden and unexpected death in epilepsy patients).
Daisy suffered from a rare and complex form of the condition called Severe Myoclonic Epilepsy for the last five and half months of her life. Sadly, medication failed to stop her seizures and so her parents turned to an obscure diet first developed in 1920s America to save their little girl.
David, Sara and some of their friends have now set up The Daisy Garland charity in memory of their daughter to campaign for greater public awareness of epilepsy in children and to fund ketogenic dieticians throughout the UK. The high-fat meals are able to control seizures in patients who are found to have resistance to anti-epileptic drugs.
The charity’s very first grant worth ?24k will fund a ketogenic dietician at St George’s University Hospitals NHS Foundation Trust, the local hospital where Daisy underwent treatment.
David Garland, Daisy’s father, said:
“Anti-epileptic medication didn’t work for Daisy and from the age of 18 months her seizures were managed by the ketogenic diet.
“We truly believe the diet prolonged Daisy’s life and rescued us a family.
“Our dream is to fund Daisy Garland Ketogenic Dieticians through the UK, offering children like Daisy the chance of having intractable epilepsy controlled by this amazing diet.”
The ketogenic diet was first developed in the 1920s at John Hopkins University Hospital, Baltimore and is a mathematically calculated, doctor-supervised diet, which alters the body’s chemistry by simulating the metabolism of a fasting body.
The ketogenic diet is high in fat and low in protein and carbohydrate, and is formulated to sustain the state of ketosis within the body. Ketosis occurs when the body principally burns fat instead of the more common energy source, carbohydrate. Ketones (the ash or residue left after the fat is burned) are concentrated in the blood and inhibit seizures, although the reason why is still not known.
Nicole de Santos, chief paediatric dietician at St George’s Hospital, said:
“A large proportion of children with epilepsy have seizures that are resistant to medication. This can impair their ability to learn and reach their full potential.
“The ketogenic diet is an accepted therapy for children with hard to control seizures.
“For some it results in a better quality of life with fewer side effects than any other therapy.
“We would like to thank the Garlands for their kind and very generous donation. The post they are helping to create will benefit so many of the children we treat here for epilepsy.”