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.
Gabriel was first diagnosed with epilepsy in January 2008 aged 18 months after 3 clusters of tonic clonic seizures in 4 months, each getting progressively worse and resulting in longer hospitalisations. Drug treatment followed and we had 7 months with no seizures at all. Then in October 2008 he began to have atonic drops, absences, focal seizures and another tonic clonic. His medication was increased but the absences, focals and drops didn't go away. After another tonic clonic in May 2009 he had reached the top of his dosage and his medication was changed. His first drug had made him sleepy, but the new one made him manic! He soon reached the top end of the dosage for his size and another drug was added in to try and gain some control. He was averaging 20+ seizures a month by September 2009 and he peaked at over 50 in the October.
Thanks to a free copy of the DVD “First do no harm” in the Mail on Sunday bought during a hospital stay the year before, we were aware of the ketogenic diet, but we had always put it to the back of our minds as we hoped that his drug treatments would work and Gabriel would grow out of his seizures sooner rather than later. When he didn't we were starting to discuss another drug change with his neurologist. The thought of changing again sent me to the internet to see what I could find out about the diet. That's when I found the Daisy Garland. I sobbed all the way through Daisy's story and her legacy of hope touched my heart. Then I saw that there was a Daisy Garland Ketogenic dietician at the Queen's Medical Centre, Nottingham – it was as though I had found Willy Wonka's Golden Ticket! I couldn't believe our luck, I'm surprised Damian could understand what I was going on about it as I gushed about the diet being on offer at our hospital. We decided to ask about it at his next consultant appointment, we had nothing to lose and I started reading everything I could lay my hands on. Gabriel's neurologist put us in touch with our fabulous dietician and we arranged to go in and see her as soon as possible and were delighted to get an admission date sorted out.
Gabriel started on the MCT diet in November 2009 aged 3 ½, and, after a shaky first meal and a couple of seizures on the ward I was amazed at how quickly he got into the rhythm of it all – not to mention his utter joy at being allowed to eat little packs of butter with no bread! A few days later we went on a ward trip to see Disney on Ice and the little boy that couldn't sit still, sat glued to his chair munching keto friendly snacks completely mesmerised... that was the moment we knew we were doing the right thing. Keto kids really are amazing little people! Gabriel will walk around the supermarket picking up sweets and other high carb foods and tell anyone prepared to listen that he isn't allowed them but will have lots of them “when I am off my diet”!
We are still in the relatively early days of the diet and the support we have received from the hospital and the Daisy Garland has been fantastic, Gabriel's seizures are down to less than one a week and far less intense than they were pre diet, he is calmer and his big brother has a playmate now! We are now looking forward to the prospect of weaning him off his medication!
We can't thank Sara and David enough for the chance they have given our little boy – as luck would have it some friends of ours in the band Lorna UK were playing a one off gig in December 2009. They were looking for a charity to donate the profits to, I mentioned The Daisy Garland and they agreed; it was so nice to feel we could give something back so soon and raise awareness of the diet as a treatment option. Korben, Gabriels's big brother and 5 year old keto expert regularly stands up in class to regale the other children with news such as “we got an ice cream maker so Gabe can have liquigen ice cream” and has made sure his teachers are fully aware of the importance of Gabriel's diet so he can start school in September! Korben also decided to make an Easter Offering box to have in the house during Lent and asked grown ups for their small change every time they came to the house – we counted it up and he had raised £10.08 – guess which charity he donated it to?!< Previous Story | Story 22 of 29 | Next Story >
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