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 in the region of £26,000 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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Stories
Here you will find some encouraging stories about how the work of The Daisy Garland touches the lives of children with drug resistant epilepsy. These have been written by mothers and fathers and our Daisy Garland Ketogenic Dietitians.
Thomas Knaves 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
Gabriel's story - by Clarinda Tompkin
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?!
The Dhond Family
The Dhond Family
I was introduced to 'The Daisy Garland Charity' just before Rohan's first birthday. A mother of a little boy with epilepsy who I had befriended had highly recommended Sara Garland to me for her advice and support with regards to epilepsy, medications and the ketogenic diet. Rohan had been diagnosed with Congenital Bilateral Perisylvian Syndrome when he presented with a seizure at 7 weeks old. It meant that 80% of Rohan's brain had wide spread damage and he would suffer from an array of problems and the most difficult being uncontrollable epilepsy. To watch my son go through hours of seizures on a daily basis where he would scream from the pain has been unbearable.
When I contacted Sara Garland I was amazed at how somebody who had been through such an horrific experience could give so much into helping others. Sara gave me tremendous amounts of help and advice and when there were times when I felt that I couldn't carry on she would send me the most up-lifting emails which would give me the strength to carry on. She always reiterated that tomorrow was another day.
Sara's equally amazing husband David ran the London Marathon to raise money for oxygen saturation monitors which monitor children at night who have epilepsy. If a seizure affects the child's breathing the monitor will raise an alarm which alerts the parents. Rohan received one of these monitors from the Daisy Garland Charity and we are eternally grateful for it. Not only has it been a peace of mind at night but during times when Rohan is 'not himself' we can connect him up to the monitor and it gives us his heart rate and his oxygen levels and we know immediately whether he needs to be taken to hospital or not.
Rohan is now 2 1/2 and started the ketogenic diet in November 2009. He now is like a different boy. He is like part of the family at long last. Gone are the seizures which made him scream. He now smiles and makes little noises and he is beginning to use his vision. He has a 4 year old sister Lily and a 1 year old sister Rose-Erin who just adore him and we can tell that he loves them.
The Daisy Garland Charity have been an extremely important part of our life and we as a family are extremely grateful to them.
The Dhond Family
Living With Epilepsy - A Video About Bailey Williams
> Click here for the original page where you discuss this video with others
This extended 'Living with...' video follows the Williams family, whose eight year old son Bailey has epilepsy. Bailey can have up to 200 seizures a day. Seizures are an electrical discharge in brain, which may be caused by illness or brain damage, but in many cases the cause is unknown. The Williams family have taken many precautions to control Bailey’s seizures; he wears a helmet to protect his head from drop seizures, is on medication, and his bed is fitted with pressure pads that set off an alarm if Bailey has more than seven seconds of movement. Unfortunately there is no cure, but medication is frequently changed to ensure the best control over the disease.
The EB team would like to thank: The Daisy Garland Charity
Hugo Lewis - by Esther Lewis
Hugo Lewis
My 4 year old son Hugo came off the Ketogenic diet just over 3 months ago - and is seizure free! That’s right, no seizures!
It is still difficult to believe how wonderful the Ketogenic diet was for us and how it changed our lives. Pre-diet days Hugo would have up to 40 fits a day - some serious enough to put him in hospital for up to a week. 7 months ago he wasn’t able to read and he was difficult to understand. Now he is happily chatting, starting to read and almost writing his name. He was originally at a school for children with complex needs but he now attends his local mainstream school with a classroom assistant.
Hugo started the ketogenic diet in August 2007 under the supervision of a ‘Daisy Garland Ketogenic Dietitian’ at St. Georges Hospital in SW London. After about a year on the diet we agreed to lower Hugo's fat/carb ratio until Hugo was off the diet completely. It is incredible to look back at Hugo’s journey on this amazing diet.
The work that The Daisy Garland charity does is invaluable. We hope that one day the National Health Service will take the diet seriously enough to fund it themselves. Until that time, the Daisy Garland charity is the only hope for children like Hugo.
Hugo and his mum Esther appeared on ITV’s ‘This Morning’ Programme on 10th June 2009 with Dr Chris, discussing the ketogenic diet. I would just like to point out that the examples of high fat foods that appeared on this programme were not the kind of foods we ever used on the diet! So please don't think that this is an unhealthy diet full of saturated fats. Lard?? Yuck!! They could have included lots of yummy nutritional high fat foods such as oily fish, fresh lamb and chicken, healthy oils, nuts, eggs, cream, mayonnaise, cheese and lots of lovely fresh low carb fruit and veg - avocado, swede, asparagus, celery, kiwi, pineapple, cabbage and the list goes on and on, and on! Delicious!
Baby Scarlett - by Maria
Maria with her baby Scarlett
My baby, Scarlett, was about a year old when Sara Garland told me that we could have a grant for an Oxygen Saturation Monitor. Scarlett was having approx 6 seizures per day, but would sometimes go 1 - 3 weeks without any, so it was very difficult to know when they would strike.
Sometimes during a seizure, she would stop breathing for so long that she would go unconscious and I would have to resuscitate her. I dreaded the thought of not being present during those big seizures. When Sara offered me the Sats Monitor, I cried. Nobody can watch their baby every single second of the day, and I cannot put into words the peace of mind that it has given me.
The day after we started using it, I had left Scarlett asleep in another room whilst I did housework, and it sounded an alarm for what turned out to be her biggest and worst seizure. I dread to think what could have happened had I not been warned of its onset - I am eternally grateful to The Daisy Garland for providing our monitor.
I feel that I can never thank them enough, as Scarlett may not be here now if it wasn’t for them.
A Day in the Life of Tara Randall and Mary-Anne Leung - ‘Daisy Garland Ketogenic Dietitians’ at Guy’s & St Thomas’ Hospital, London
We arrive at The Evelina Children’s Hospital at 8.45am, when we check our emails and voice-mails.
This morning we have an out-patient clinic so we get everything ready that we need to take with us - patient notes, diet information, samples for families to try.
We have 5 children coming in today. One is coming to clinic for training on the MCT ketogenic diet. This is quite an intensive session which takes approximately 1-1½ hours; the whole family attends, as it’s important that everyone involved in the child’s care understands the diet. It takes about a day to prepare a new ketogenic diet as the diet is calculated for each child individually. We endeavour to ensure that the children following the diet continue to grow and develop well, achieve ketosis and are happy and compliant following the diet.
We are also seeing one of our established keto children and her parents with the Specialist Speech and Language Therapist. This little girl is fed by a gastrostomy and is very aversive to having food by mouth. The speech Therapist gives some strategies to help which involves some teeth cleaning techniques!
We finish clinic between 1 and 2pm and head off to the Atrium for a quick sandwich.
After lunch we work on any adjustments to the diets of the children seen in outpatients. This can include increasing or decreasing the diet’s calorie content, working out new recipes, changing the ratios, devising plans to wean off the diet, etc.
Later in the afternoon we have a meeting with the keto team - Dr Ruth Williams, Paediatric Neurology Consultant and Layla Robinson the Specialist Outreach Epilepsy Nurse - to discuss action points from the morning clinic.
We then do some discharge planning for a baby on the ward who will be going home next week on a ketogenic feed. There’s a lot to do - letters, a phone call to his local dietitian, arrangements for a feed prescription and feed pump plastics. We end our day planning our next Parents Lunch Meeting. These meetings are a regular and important event as it is a good way for us to meet with parents away from Clinic to hear how things are going. At 5pm we tidy our work stations and head off to catch our trains home after a very busy but rewarding day!
A Big Celebration! - by Karen Cronin
Maddie (left)
On the 3rd October 2009, we had a party to celebrate my 40th birthday and Maddie’s 10th birthday. It was a great party and instead of presents Maddie and I decided that we would raise funds for The Daisy Garland. We raised over £330 and we were delighted.
The charity meant so much to us because of our own journey living and coping with Maddie’s epilepsy. Sara knew what we were going through, she understood and she was a much needed lifeline at one point on that journey.
Sadly, Maddie was never a candidate for the Ketogenic Diet. After many agonising appointments and hospital investigations we found out that Maddie was a possible candidate for surgery. People have said that it must have been a hard decision to make for your child but actually it wasn’t. Her life was so hard with 3 to 4 partial seizures a day, sometimes lasting up to 15 minutes long. Therefore we decided to go for the surgery. Maddie was so brave, it was a difficult procedure and heartbreaking to watch her go through it. However, her final surgery was on 2nd April 2009 and she has been seizure free ever since! Praise God! I say that because Maddie asked me if she could be baptized so the night before her surgery we were both baptized in St. Christopher’s Chapel in Great Ormond Street Hospital.
2009 was a truly amazing year and it ended with Maddie winning a local competition to be Santa’s helper for the day! We had the best Christmas ever and now we are just having a ball! Thank you Sara for all your kindness, we will never forget Daisy and the wonderful work that you do.
Angel Becky - by Wendy Easton
Becky Easton
The “Daisy Garland”, what a lovely name for a charity, I thought! My daughter, Becky, had just started on the Ketogenic diet and as usual I was Becky Easton trawling the Internet for even more information. The website grabbed my eye and from then on I was a regular visitor, keeping up to date with the information and loving the personal touches put on by Sara. I was equally impressed by the beautiful Daisy Garland Christmas cards and ordered several packs. When they arrived, I was bemused to see that one of the packs contained one card that had been partially written on in what I now know is Sara’s handwriting. Jokingly, I sent this back to Sara as a Christmas card from my family, with a few friendly greetings and received a lovely letter back from her enclosing some Daisy Garland notelets in recompense. I continued to visit the DG website and posted on Daisy’s Café about one of Becky’s problems and whether it might be linked to the diet. I was also very taken with the story of little Daisy; she seemed to have been so very like my own daughter. Sadly, the next time I contacted Sara was to let her know that my daughter had died. Becky had been 10 years old and had suffered with epilepsy for about 8 years. She also had an underlying undiagnosed regressive neurological disability, which meant she could no longer walk, talk or swallow and had various other problems such as scoliosis and severe pain of unidentified cause. The medics at Great Ormond Street Hospital were at a loss to help her. One of the few things that helped was the introduction of the Ketogenic Diet which was very effective in controlling and reducing the numerous and variant seizures that Becky endured. But sadly her underlying disability proved too much for her and the seizures returned with devastating effect and her body and heart were unable to cope any longer. She died on 7th July 2008. Sara Garland has been a tower of strength for me in the 8 months since Becky died. Our regular emails have kept me going and given me strength during the bad days and we have become good friends with much in common. Nothing can ever replace Becky, but having the friendship and support from someone who has also lost their precious child is an immense comfort and an essential part of my recovery.
A Day in the Life of Nicol Clayton ‘Daisy Garland Dietitian’ at North Bristol NHS Trust
Nicol took up her post at Southmead Hospital in Bristol in July 2009.
As a regional referral centre for neurology, Bristol Consultant Neurologists are keen supporters of the ketogenic diet as a treatment for those children whose epilepsy cannot be adequately controlled with medication. However, previously we had to apply for funding for each individual patient referred, which meant that patients often had to wait a long time before funding was agreed, and some patients ultimately had to be turned away. It was therefore a fantastic boost to receive the Daisy Garland funding last year and I was able to fully take on the role of ketogenic dietitian so that we could develop our service and see more patients much quicker!
My day starts by meeting a recently referred patient with their Consultant Neurologist, where we discuss all the possible treatment options and review the progress made so far. As medication is not adequately controlling the seizures and the family are keen to try using the ketogenic diet, I see the family after the medical consultation and we run through the basics of the diet.
This first meeting with a new patient is often about explaining the foundations of the diet – what is a carbohydrate, where is it found in the diet, and which foods would be restricted alongside how much fat is needed on the ketogenic diet and how it is incorporated into the meals. I show parents pictures of typical meals and we look at the child’s current diet and talk through some of the changes that would be required. As the ketogenic diet involves having high levels of fat, there are a number of tests the child has to undergo before starting the diet to make sure that they are medically safe to commence. We go through these and I also explain how the parents would be able to test for ketones once on the diet, both in their child’s blood and urine.
I give the family a starter pack of information and also a book of recipes, containing typical meals and ideas for making ketogenic bread, muffins, pancakes and biscuits. Over the next month the family will be able to try these with their child to find meals and snacks they are happy to eat, which I will build into their individual diet plan.
Back at the office, I write to the child’s local Paediatrician and GP with details of the tests that need to be done, and asking them the best way to contact them as I expect that I will be speaking with them regularly over the coming months. I also notify Sara at the Daisy Garland (with the patient’s consent), who arranges to send the patient a really useful starter pack, containing essential items needed for the diet such as weighing scales, tupperware containers, carbohydrate free sweetener and information booklets, which the patients really appreciate. It’s then on to emails - as we see patients across the region I frequently use email and telephone contact. A patient has sent through to me their blood ketone readings for the week. This patient’s seizures have been really changed by the ketogenic diet, going from several violent seizures a day to one small one a week, and their child is now alert and happier, Mum is really concerned when she noticed that her ketone levels had dropped recently and her seizures were starting to increase. We go through the diet with a fine tooth comb, making sure that no extra carbohydrate has crept in from unknown sources, such as new medications. We make a couple of changes to ensure that the diet is still providing enough energy for growth and contains enough fat and agree to review her closely over the next week. My next email contains lovely news from a family who have just started the diet and are finding it easier than anticipated to manage. In fact the celeriac mash, used to replace potato, is a great success with all the family! They have also sent through a ketogenic recipe for cheesecake, for others to try. As a developing centre we are building up our database of resources, so, after a quick lunch stop, I calculate the nutritional content of the recipe and add this to our recipe book for new patients.
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