What we do
The Daisy Garland charity was set up in November 2004 to keep Daisy’s memory alive and to help other little children like her.
We fund an increasing number of Ketogenic Dietitians who work in National Health Hospitals treating hundreds of children with intractable epilepsy.
We are the only UK charity funding Ketogenic Dietitians - each dietitian costs up to £45,000 per annum. If you think you could help us fund our next Daisy Garland Ketogenic Dietitian go to HOW YOU CAN HELP. Be in touch today.
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The Daisyometer shows how much we have raised so far to keep our Daisy Garland Ketogenic Dietitians in place for a total of 3 years at the Royal Hospital for Sick Children, Edinburgh.
2011 Daisy Ball Presentation by Daisy Dietitian Nicol Clayton
Nicol Clayton, Daisy Garland Ketogenic Dietitian, Southmead Hospital, Bristol
Nicol Clayton, our Daisy Garland Ketogenic Dietitian at Southmead Hospital Bristol was invited to say a few words at our May 2011 Charity Ball...
"My name is Nicol Clayton and I am the Daisy Garland Dietitian based in Bristol, taking patients from across the South West and South Wales.
I first met Sara, David and the lovely Grace one sunny afternoon in 2009 to discuss funding of a ketogenic service in Bristol. For any health professional, taking on a role that is dependent on outside funding requires a leap of faith, but I was so inspired by Sara and David, that I left determined to become the best Ketogenic Dietitian I could be. And so it was, that in July 2009 I jumped in with both feet and became a Daisy Garland Ketogenic Dietitian.
Many of you will know that the ketogenic diet is a highly specialised diet, where most of the carbohydrate foods such as pasta, bread, cereals, rice and potatoes are replaced with fat, using foods such as butter, cream, and oils. In practice, this means devising inventive ways of making over 1000 kcals of fat a day, taste great to a wide variety of age groups, and for the parents, lots and lots of weighing.
This combination of carbohydrate restriction and high fat intake enables the body to produce ketones, which then pass into the brain and provide an alternative and potentially less epileptic form of fuel for brain cells. Some of you may have heard of names such as Classical diet, MCT diet, modified Atkins diet, however these are really just group names.
Blisse Mellens - one of Nicol's keto patients
I work very closely with my families to create a diet that both meets their child's ever changing nutritional needs but also fits into the family. No diet looks the same. The families I work with are one of the most rewarding, motivated and inspirational group of patients I have ever worked with, and there are some wonderful experiences when the diet works. Parents tell me, "It's like they have switched the light back on" and "We have our child back".
And the simple things that most people take for granted start to happen -
A six year old who is able to ride a scooter and have a shower for the first time now the drop seizures had gone.
A four year who had slept through the night for the first time.
A five year old girl whose daily seizures caused her to bite her tongue constantly is now happy, smiling and seizure free.
It is really hard when the diet doesn't work or cannot be tolerated. But alongside the sadness and disappointment the family say "at least we got the chance to try"
Daisy Garland funding is pivotal to our success in delivering the ketogenic diet in the south- west. Prior to funding we operated a small service with a very long waiting list and little opportunity to develop our resources. Prior to Daisy Garland Funding, In 2008 we had 16 referrals.. After Daisy Garland funding, in 2010 we had 46. I have developed our patient resources, undertaken research and contribute to the UK dieticians professional group. I present to dieticians and neurologists across the south-west to both educate and generate support for ketogenic diet therapy.
In the UK 60,000 children have epilepsy, and a third - around 20,000 will not respond to drug treatment. As of today there are only 288 children on the ketogenic diet in the UK. Although I am immensely proud to be a Daisy Dietitian, I share your disbelief, that access to the diet isn't available to all, with permanent funding from the NHS.
Whilst I continue to petition commissioners to contribute financially for each of the children we place on the diet, in truth, it is The Daisy Garland funding that enables this service to exist.
I heard a parent say that they would fly to the moon to help their child. You have swam, sky dived, rode bikes, run marathons, shaved hair, manned stalls, given away money from the tooth fairy, and made it here tonight so that I can continue to offer the ketogenic diet - and you live with a child who has epilepsy. That's flying to the moon.
Thank you."< Previous Story | Story 17 of 29 | Next Story >
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