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.
2010 Daisy Ball Presentation by Mum Maria Hambley-Allen
My name is Maria and my husband’s name is Jeremy. We have a two year old daughter called Scarlett who has a rare chromosome disorder and various medical problems including epilepsy. When she was only two and a half weeks old, she started having seizures and this is what prompted doctors to discover her disorder. She was having an average of two to ten seizures per day. At that time I managed to successfully treat Scarlett’s epilepsy with homeopathy as I am very against drug use due to the horrendous side effects.
Thinking about the Ketogenic Diet
I had researched information on the Ketogenic Diet and had it in the back of my mind in case we needed it in the future. From eight weeks old, Scarlett became seizure free. Sadly when she was about five months old, she started with Infantile Spasms - a rare and very serious type of epilepsy. She was treated with steroids, but they had very limited success and the seizures returned within a month. In addition to the Infantile Spasms she also started having tonic clonic seizures, where she would stop breathing and sometimes go unconscious and I had to resuscitate her. She could have up to ten per day varying in severity, but sometimes she would go a whole week without any. This meant our anxiety levels were very high as you simply never knew when they were about to strike and you lived in constant fear.
The Daisy Garland Charity
This was when, by pure chance, I came across The Daisy Garland website whilst looking for information about the Ketogenic Diet. I sent an email to The Daisy Garland asking various questions about the Diet and Sara Garland contacted me immediately. I dread to think of how my life may have been had I had not stumbled across their web site at that time. I cannot put into words how much support Sara has given me over the last sixteen months.
Daisy Garland Ketogenic Dietitian - Plymouth
I didn’t realise at the time how incredibly lucky we were that there was a ‘Daisy Garland Ketogenic Dietician’ based at our local NHS hospital in Plymouth, who was taking on new patients. Staggeringly many parents have to wait for up to eighteen months to go on the diet. It can take several weeks from getting a referral from your doctor, to actually having the diet up and running and during this time Sara was in constant contact with me by phone or email. It is such a black time to look back on and remember as it was a time when we were in and out of hospital with prolonged seizures, hardly daring to sleep in case Scarlett had a seizure; so Sara’s support was a real lifeline.
SATs Monitor Grant
One day during this difficult time, Sara asked me if we would find it useful to have some sort of alarm that would sound if Scarlett had a seizure. She had in mind an oxygen saturation and heart rate monitor (a SATs Machine) like the ones they use in hospitals. The SATs Machine sounds an alarm if a patient stops breathing or if their heart rate changes radically, as it does during a seizure.
Many people die from epilepsy and SUDEP (sudden and unexpected death in epilepsy patients); such as Daisy, but many could well be saved if more of these alarms were available for use in the home. No one can physically watch over their child every second of the day and I used to be terrified that Scarlett would have a seizure that I wouldn’t see - particularly during the night. I hadn’t even given thought to a monitor and additionally, they’re hugely expensive. When I got off the phone I just cried – partly with relief that we were being given one and partly due to the fact that here was someone, who from first hand experience, very sadly knew what we were going through; and who wanted to do her utmost to ensure that others don’t suffer the same.
Scarlett’s Worst Seizure
Sara got the monitor to us very quickly, which turned out to be just in the nick of time. I’d only had the monitor a few days when Scarlett had her biggest and worst seizure. Whilst it was still incredibly scary to deal with, I can hardly bear thinking about the consequences had Scarlett not been attached to the monitor? Scarlett had completely stopped breathing and was totally lifeless and blue by the end of the seizure, and if I had not been able deal with it immediately, she would probably have died or have had severe brain damage.
Starting the Ketogenic Diet
We eventually got the Ketogenic Diet up and running at the end of March 2009, and at ten months old, I believe that Scarlett was one of the youngest to use it. Yet again, Sara was with us every step of the way and The Daisy Garland funded a book to use in conjunction with the diet, which I found absolutely invaluable. By the time the diet commenced, Scarlett’s two different types of epilepsy had taken over her life and she was having hundreds of seizures a day. Amazingly, the diet quickly had a huge impact on the tonic clonic epilepsy which reduced in frequency and severity by about 70%. Unfortunately after 3 months of being on the diet the Infantile Spasms were getting worse, to the point where Scarlett was just an empty shell who would not smile or look at anything and had gone all floppy like a very young baby. The doctors tried again with steroids, this time combined with the diet, but yet again they failed to control the seizures.
Last July, we eventually resorted to trying Vigabatrin (an anticonvulsant drug), which we had not wanted to use due to the fact that it causes permanent vision loss in a large number of patients. Thankfully, this drug worked and within a week we saw a glimpse of a smile from Scarlett, who has since gone from strength to strength.
Thank You Daisy Garland
I can’t thank the Garlands enough for their help and support. I truly believe that the monitor they purchased for us saved Scarlett’s life, and nothing I could put into words seems enough to express our gratitude. For people who give their support to the Daisy Garland, I’m glad to be able to recount to you first hand how you’ve helped, and I thank you from the bottom of my heart.< Previous Story | Story 20 of 29 | Next Story >
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