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.
Thomas Knaves' Keto Journey
Thomas was born on
My nightmare began when Thomas was just 2 months old. I noticed that his head kept dropping to one side and mentioned this to my midwife but she said that his head was just too big for his body. But when it kept happening I decided to film so that I could show the doctor exactly what was happening.
The doctor didn’t really explain what was going on, but arranged an appointment for him to see a consultant. A week or so passed and nothing prepared me for what was about to happen to Thomas.
I was on my own with Thomas, 4 miles away from home in the middle of nowhere and he started to have a convulsion. I phoned my mum to tell her what was happening before rushing Thomas straight to the doctor - I can’t even remember how I drove there but I did. We were told to take Thomas straight to the hospital where he was admitted as an in-patient for a week of tests. He had test after test but there were no answers as to what had caused the seizures so Thomas was sent home on anti-convulsant medication. He was now having over 50 infantile spasms a day.
It was a very frustrating and upsetting time for me and I was absolutely petrified, but I really thought that once we were home things would settle down and the medication would stop his seizures. As time went on there were more and more trips to the hospital. Thomas had lots more tests and he was given more medication. But nothing was helping Thomas - it felt as if there was nothing out there that could control his epilepsy. After a while his consultant prescribed steroid injections and shortly after having them his seizures stopped. and Thomas began to crawl and walk - I can’t explain how fantastic this felt.
Then one day, my worst fear returned. I started to notice slight eye movements, which looked very much like seizures. So back to the hospital we went for more appointments, tests and drugs. Everything drug Thomas tried seemed to start off well, but the positive effect of the medication would soon wear off and his seizures would return.
Thomas went to
His consultant then suggested Thomas going on a VNS (vagal nerve stimulation) trial and I was willing to give it a try in the hope of giving Thomas a better chance of becoming seizure free. He had been on so many drugs for so long that it had seriously effected his development and his every day life.
Before Thomas tried the VNS he had to trial a drug for 15 months but like every other drug he had tried, there was a honeymoon period where it all started off well but then went down hill and the seizures returned. So we agreed to go ahead with the operation to implant the VNS.
I was very frightened when the time came for him to have his operation (the VNS is implanted under the skin in the chest area) but I had to try my best to give my son a better chance in life so off we went to Kings College Hospital for the operation. It took a lot of courage to do this and when got there we discovered that the operation had been cancelled so we had to come all the way home again. We soon received a date for a second appointment and I felt just as anxious this time around but I knew I had to be strong and go ahead with it. The operation went well, all the scars healed quickly and when the device was finally switched on we saw an improvement, but from past experience, I was frightened to get my hopes up too much. The VNS was adjusted several times and we saw a definite improvement in Thomas in terms of his alertness but sadly his fits only improved slightly.
A few years went by but none of Thomas’ treatment seemed to be working very well so I decided to mention the Ketogenic Diet to our consultant as I felt that Thomas was ready to try something like this.
I had heard lots of good things about the diet and now I was more than willing to try this as a next step to help Thomas.
Our consultant referred us to see a doctor at Guy’s and
Guy’s and St Thomas’ are lucky enough to have two ‘Daisy Garland Ketogenic Dietitians’ based at the hospital who have both been funded by The Daisy Garland charity. Because of this charity, my son was going to be given the chance to try the ketogenic diet. It was our last hope….. and deep down something inside of me told me that it just had to work. It was wonderful to think that we were going to be trying something to help Thomas that didn’t involve giving him another drug. It felt so exciting!
Just before we started the diet, The Daisy Garland sent me one of their lovely complimentary ‘ketogenic welcome boxes’ filled with really useful things like, a set of electronic scales, lots of little Tupperware pots, a spatula to scrape every scrap of food and oil from the pan, a bottle of hermesetas liquid sweetener (which is very difficult to find) a book about the ketogenic diet explaining how it works, one of their ketogenic handbooks and some other really useful bits and pieces.
From day one of the diet I saw an improvement - I could see something had changed in his eyes. I certainly don’t get my hopes up anymore, because they have been shattered so many times, but this time things felt different and I could feel that something good was about to happen.
I have to admit that I found the diet a real struggle to begin with because I had to make sure that everything I did was just right and I was so worried about doing something wrong. But I quickly got into the swing of things and soon I wasn’t so worried.
After a week on the diet it was as if I had a completely different little boy! He had a spark in his eyes which was something I can honestly say that I had never seen before. His seizures also began to improve and although it’s still quite early days yet, I can see an improvement in Thomas and his seizures every day. Had we of tried another drug instead of the diet, by now we would have been going down hill again - but with the diet it’s another story. A far happier story.
I am delighted to report that in the five months that Thomas has been on the diet his seizures have reduced by at least 50% and the remaining daily seizures are small head drops, and perhaps one mild seizure lasting between 30 seconds and a minute which is just amazing. I am hoping that the longer we are on the diet, the more the seizures will decrease, perhaps one day disappearing altogether. But for now, Thomas is coming on so well and it’s just fantastic to see. Everyone we’ve met has noticed the positive changes in him and he has just started to make word-like sounds as he has been unable to speak up until now.
Thomas is now nine years old and I like to think that the future is finally beginning to look up for him - at long last. I have to keep reminding myself that we are only five months into the diet, but those five months have been an amazing five months. Thomas is such a remarkable little boy - so happy, loving and accepting of what life has thrown at him. I really do hope that the ketogenic diet turns out to be just what the doctor ordered - it certainly seems that way so far!
Sara Knaves - Thomas’ Mum< Previous Story | Story 21 of 29 | Next Story >
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