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.
Isaac, our beautiful little boy, is 5 years old. He had his first seizure at just 6 months. He had all kinds of seizures ranging from infantile spasms, absences, eye rolls and myoclonic jerks, right through to full-on tonic clonic seizures and that's how life went on for little Isaac. He was put on various anticonvulsant medications as well as steroids. In total he tried about eight meds and at one point he was on three at the same time, but none of them managed to stop his seizures. It was depressing to see our happy 6 month old baby gradually becoming bogged down by medication and seizures. We were at our wits end and just couldn't see any light at the end of the tunnel.
When Isaac was 2 and a half, he started nursery and that's when I first heard about the ketogenic diet. A little girl in Isaac's class had tried it with great success. When we asked our neurologist about the diet we were told that it only had a one in three success rate and that it took a long time to work. We were recommended for Isaac to have the VNS (Vagal Nerve Stimulation) operation, but we didn't want him to, and that's when things finally came to a head. Isaac's seizures got worse and worse and in the summer of 2010 we ended up in High Dependency. It was then that we were told that we could have a referral to see a ketogenic dietitian and Isaac's name was put onto a waiting list.
Several months later, in February 2011, Isaac started the ketogenic diet. Starting the diet felt very scary because it really felt like our last hope, and I was dreading it not working. But with lots of help, support and avice from The Daisy Garland charity, we finally managed to get the diet underway. I have to say that it was no easy task, as Isaac is a very fussy eather, but between ourselves and our dietitian, we did manage to find some things that he was happy to eat.
In the early days of the diet I will always remember thinking 'this diet just isn't working' because Isaac's seizures had increased. But with more advice from The Daisy Garland and a few dietary tweaks, we started to notice a positive difference in Isaac and a decrease in his seizures. We were so excited, and as the days went by things went from strength to strength for Isaac.
Isaac hasn't had a seizure since December 2011, which is just incredible, especially when I tell you that since the summer of 2012 he has been medication free. We were very lucky that the diet had such an incredible impact on Isaac's epilepsy and because of this, we are so pleased that we gave it a try and struck to it, even when we felt in the beginning that it wasn't really working that well.
To any parent reading this and thinking of trying the diet, my avice to you would be 'you must do it!' It's by no means an easy option as it's quite labour intensive and it can require a fair bit of tweaking, but the results are so worthwhile. We feel as though we are slowly getting our little boy back and seeing the smiles on his face make it all worthwhile.
I really can't thank The Daisy Garland enough, as without their help and encouragement we wouldn't have coped. In April 2010 the charity also supplied us with a SATs monitor, giving us the peace of mind at night to sleep. While we slept we knew that if Isaac was to have a seizure, dropping the oxygen levels in his blood, the monitor would alarm and wake us up.
At the end of 2012 Isaac underwent surgery to remove a kidney stone. It was very stressful ensuring it went hitch-free on the ketogenic diet, but once again The Daisy Garland were there for us and they supported us all the way. It's good to know that someone is rooting for you and I honestly don't think it would have gone so well without Sara's support and encouragement.< Previous Story | Story 15 of 29 | Next Story >
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