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.
> Daisy's story
> The Ketogenic Diet
> Our Ketogenic
> Latest news
> How you can help
> Media coverage
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.
When parents of a child with epilepsy is informed that their child's condition is uncontrollable, life changes instantly. When the results from the latest EEG shows that your child -who was once seizure free thanks to it being controlled by medication, is constantly having seizures throughout the night it installs a fear in the back of your mind.. and when medication increases and a new cocktail of drugs still doesn't control it ..that fear will cause sleep deprivation, it will cause you to look at every little movement your child makes and question yourself, is it epileptic in nature? And it is a fear that never goes away...and by right It makes it worse when your child has other complex medical issues, and you can't 100% know if -that stare into space was just a stare or, Was it an absence seizure? Was that leg stretching just a Dystonic movement or, was it a tonic seizure? All Questionable and fearful..
As parents we need to know everything about what we can do, what treatments, therapies, medication, what help there is and what outcomes that there may be. So we come home from our appointment and take to our friend google for help. We read page after page of information, fellow parents reviews, what's worked for them?, what doesn't?, what is uncontrollable epilepsy?. We install seizure dairies on our phones ..and the list goes on. Then of course.. we stumble across the word SUDEP. Sudden Unexpected Death in Epilepsy Patients. People with epilepsy who go to bed and never wake up. Not something we want to know, but something we definitely need to know...and *That fear* ..it multiplies. Your child may look ok going to bed at 8.30.. but is that the last time you'll be able to give them that routine medication at night? That last kiss on the forehead? The last time you'll flick on that baby monitor and curse because the damn thing has moved and decides to watch the wall and not your child?.
So we continue our search and we stumble across something promising - The Daisy Garland webpage, a family run charity who provides help, support and equipment for children with epilepsy. They know from experience the effects epilepsy can have on a families life, because their daughter- Daisy, who had epilepsy, died from the same thing we are trying to prevent by staying up all night. SUDEP. Right on that page we see the 'contact us for online support, how can we help you?' section ...and because we are up at all hours watching a monitor while the tiny person on the monitor sleeps, we think 'why not, it's worth a try'.
Expecting to hear back weeks later, we got a shock. Our lovely correspondent 'Karen' emailed back the very next day and true to their word, she gave us support and also set us up with an Emfit Epilepsy monitor which will alert us if he was to have seizures during the night and if he was to stop breathing.
The Daisy Garland, has not just bought us a monitor. They have brought us peace of mind, they have brought us reassurance and they have brought peaceful sleep back into our lives. We cannot thank them enough. Now, we won't miss that chance to administer rescue medication if needed ..and if anything was to happen during the night we are equipped to deal with it. We now have ongoing support from The Daisy Garland Charity who we know are just an email away if we need them.
So thank you to The Garland family, The charity, The Supporters and all the fundraisers for providing us with this... and of course to little Daisy. Without her, this would not have been an option. Thank you.
Daisy's Amazon Shop powered by
Start your Amazon.co.uk shopping here. We will earn commission on your entire purchase without this costing you a single penny more. So why not tell all your friends & family about it? Thank you for supporting our work to improve the quality of life for children with difficult to control epilepsy.