Isla Expand Lovely Isla has recently received a Daisy Garland Epilepsy Monitor to help keep her safe at night whilst she sleeps and her family are incredibly grateful to have this wonderful piece of equipment.
George Expand This is George, he's ten years old and has been on the ketogenic diet for ten weeks. Being a part of Daisy’s Keto Café helps us to know that other people understand what it's like to have a child with difficult to control epilepsy. It’s wonderful to know that someone is there to support you 24/7 with keto answers and advice is such a comfort when you're a beginner like me because it's a lot to get your head around. The advice and support we have had from the Daisy families has been invaluable (and there are always great keto-friendly supermarket finds to share too!)
Amy Expand Our first experience of The Daisy Garland was when we received a wonderful welcome box for our daughter just days before she started the ketogenic diet. Since then their help and support has been invaluable. Through their support group, Daisy's Keto Café, they have put us in touch with other families facing complex epilepsy and undertaking the ketogenic diet. Having friends to chat to and share recipes, tips and experiences has made it a much easier and less lonely journey. We wouldn't be where we are today without The Daisy Garland.
Ben Expand The Daisy Garland charity have been a wonderful support to our family since our son Ben was diagnosed with a rare, complex form of epilepsy in 2016 at the age of four. They have funded a sleep monitor for him as he has continuous seizure activity in sleep and I believe this monitor has saved his life on more than one occasion. He is also on the ketogenic diet which has been by far the most effective treatment we have tried. The support from The Daisy Garland and the keto café has been fantastic. They encouraged me to push his medical team to allow him to start the diet and I am so pleased we did.
Spud Expand The DG has been a huge source of help and support throughout our keto journey, both from an emotional and a practical standpoint. It's given us a sense of community and belonging in what would have otherwise been a very lonely and isolating journey. Knowing there is always someone there when I need help and advice has made a huge difference to how i implement the [ketogenic] diet for my son and has allowed me to more effectively help my child xx
Mason Expand Mason was diagnosed with Lennox-Gastaut syndrome* over two years ago. I found The Daisy Garland while we were looking into the ketogenic diet as no drugs were working. The help and support they offer is amazing and the goodies they set for when Mason started the diet helped so much. No question was ever too much for them to answer even if it seemed silly, they never saw it like that, they would help you through the tough times. When we wanted to give up on keto, their encouragement and continued support was amazing. We did nine months on diet but stopped as it wasn't doing as good as we hoped but I am really glad we gave it a go. Even now we’re off the diet, if I need to rant or chat The Daisy Garland are always there to listen and answer. * Lennox-Gastaut syndrome is a severe condition characterized by recurrent seizures that begin early in life, usually betweeb ages three and five. Affected individuals have multiple types of seizures, a particular pattern of brain activity (called slow spike-and-wave) and impaired mental abilities. Seizures associated with Lennox-Gastaut syndrome often do not respond well to therapy with anticonvulsant medications.
Archie Expand Having this monitor means that my 5 year old son, Archie, can sleep in he’s own room with peace of mind for both of us that we will be alerted of his tonic clonic seizures. Thank you so much Daisy Garland for helping my son to live more independently x
Sophie Expand Our Daisy Garland SATs monitor is a true god send at the moment! I can’t imagine our life without it and how we survived for so long without it! I used to ‘sleep' and listen to any changes in Sophie’s breathing at the same time to try and detect any seizures!! We still have difficult nights with her but at least we have the reassurance that she is safe when asleep.
Anna Expand Anna has had a hundred seizure-free day today!!! This is a new record for Anna not only on the ketogenic diet but since she was diagnosed with epilepsy five years ago. Anna would not have been able to access the diet without Daisy Garland funding support so we are very grateful to you and your team for all you do for families like us. Thank you for all your help.
Poppy Expand Poppy is seven years old and started on the ketogenic diet in October 2018, a year to the day after her first seizure. Since being on the diet her seizures have improved by around 80% and her cognition and general happiness has also improved considerably. The Daisy Garland have been a huge help and comfort, not only during our time on the diet, but with other questions and worries we have had along our journey. We would be truly lost without their support and that of our Keto Cafe family.
Maddie Expand Maddie is six years old and has been on the ketogenic diet for just over two years. Before trying the diet we were stuck in a place where meds weren’t working, no matter how many we added, and quality of life was rapidly going down hill. The ketogenic diet has been a game changer for Maddie. Significantly reducing the number, severity and time of the seizures she does have. Quality of life has improved massively. We have our little girl back ❤️ We are forever thankful to The Daisy Garland. The whole team have been amazing from day one. They have put us in touch with other families and been there when we need them. Thank you! Xx
Eliza Jane Expand Eliza Jane contracted pneumococcal meningitis and septicaemia at ten months old. This left her with extensive brain damage which has resulted in epilepsy that we can’t control. We went on the ketogenic diet as drugs weren’t working or if they were there were nasty side-effects (constantly tired and not learning). When we got put on the keto diet, The Daisy Garland was an absolute god send. I really don’t think we would still be on the diet seven months on had it not been for their help and support. Since being on the diet, Eliza’s overall development has dramatically improved and her epilepsy has definitely got better. Yes it’s hard when Eliza goes to parties and can’t have cake etc but it’s all worth it when you don’t have to use harsh medicines. Thank you Sara and team for all your help and support!
Hope Expand Hope has a Mitochondrial disease. She’s been on the ketogenic diet since she was three. She’s now ten and has been seizure-free for over six years. I’ll never forget how kind Sara was in those early days. I spoke to her with desperation when we couldn’t get on any waiting lists to start the diet. Eventually we did get a dietitian at a hospital we were already under, but Sara had things in place that meant we would have got seen! She was there to support and send a parcel and thoughtful items - including a little notebook for mummy who was feeling rather overwhelmed by the condition and the diet. We’re totally rocking it now - but always grateful for the support we received in the early days.
Ella Expand Ella is six years old. The Daisy Garland gave us hope. Being diagnosed with GLUT1, knowing the ketogenic diet was our only option was overwhelming. The Daisy Garland team offered practical advice, an amazing box of goodies and emotional support. It would have been a much harder journey without them.
Emyr Expand Our son Emyr was diagnosed with epilepsy in March 2017. He has absence seizures and from his first EEG it showed that his seizures were taking place every ten seconds or so, totalling more than two-thousand a day. The impact this diet has had on our son is nothing short of a miracle. I only wish that we had been made aware of this before having gone through the heartache of some of the medications and their horrific side-effects. Emyr is still on two different anti-convulsants but the quantity of these has not changed since March 2018, therefore the benefits we are seeing are purely diet related. A huge thank you must be said to The Daisy Garland, the Ketocafé Facebook Page and Bristol Ketogenic Dietitians, along with our neurologists and paediatric doctors. The support and help that we have had has been invaluable. Here’s to looking to the future and all that it brings. Life’s a journey, enjoy the ride.
Charlotte Expand This is Charlotte - she was diagnosed with Glut-1 in September 2018. Prior to that she had been through a whole heap of medication to try and control her epilepsy, and was feeling very poorly and unable to attend school on many days. She couldn’t walk ¼ of a mile without assistance. Last weekend she RAN one mile with mummy!! This is all down to the Keto diet and the amazing support from The Daisy Garland. Click here to read more... Charlotte's story
Teddy Expand This is Teddy, he is six and has been on the ketogenic diet for over two years. Teddy has SCN1A epilepsy syndrome which means he is genetically predisposed to seizures. Before he started the diet Teddy was regularly admitted to hospital for prolonged seizures and despite taking three different epilepsy medications he was still having debilitating seizures and could not attend nursery and spent most of his time at home. The diet has enabled Teddy to go to school and given him his life back. We will always be grateful for all the work Sara and the Daisy Garland do for us, they are incredible!
Gethin Expand This is Gethin, aged six. We are at the beginning of our keto journey, but already Daisy Garland is giving us so much hope and support with the ketogenic diet, making it much more manageable x
Ava-Rose Expand This is Ava-Rose, she has a microdeletion of 16p11.2 and Scoliosis and Epilepsy, she has been on the ketogenic diet since July 2018, her seizures have reduced and its been proven she is under keto control by accidentally dropping her ketone levels. The Daisy Garland are an amazing charity, they have helped us as a family immensely, they funded a bed monitor we could not have afforded ourselves. They have helped us with the diet and a starter pack and lots and lots of help they continue to give us we are so thankful to them, they have meant our daughter is far more alert than she was before starting the diet and has a lot less seizures too. Thank you so much Daisy Garland xxxx
Micah Expand I look forward to the future and The Daisy Garland has given me hope that the future is not bleak. Please click here to read Micah's story.
Jessica Expand Pre-diet Jessica couldn't even walk to our local shops without needing her wheelchair due to horrible fatigue and exhaustion. Today she walked for two and a half hours !! We are staggered at how the diet is changing her - thank you for giving us this opportunity for normality. xx
Ben Expand Ben is now seizure-free, medication free and diet free - thank you Daisy Garland for giving us our son back Please click here to read Ben's story
Daniel Expand I don't believe we would still have our precious son if he had not had access to the ketogenic diet. I think of you and David every night when I tuck my boy into bed. Thank you. xx
Millie Expand The Daisy Garland have been an amazing charity for us with things from advice on the ketogenic diet, lovely gifts in the post to help us with the diet, help and support for all families that are going through this and even words of encouragement when, like all parents, you just need to know you are doing the right things. It is also lovely to be able to swap/share stories or tips with the other families and even the occasional cyber hug when things get really tough. Just having people there that know exactly what you are going through, so you don’t feel alone, helps normalise our crazy rollercoaster ride a bit.
Neve Expand David and Sara Garland visiting Neve at home. The Daisy Garland support has been incredible for our family. Click here to read Neve's story
Isi Expand "Isi is six years old. The Daisy Garland has been a lifeline to our whole family in terms of ongoing emotional support and in providing a night-time breathing monitor so that we can sleep at night knowing that she is at a much greatly reduced risk of SUDEP. The Daisy Garland also provides fully funded dietitians to the NHS so that Isi can use the incredible ketogenic diet as a form of treatment alongside three strong anticonvulsant drugs. Isi started the ketogenic diet in December 2017 after eight different medications failed to bring seizure control. Isi was having eighty to a hundred seizures each day. Incredibly, since starting the diet, Isabelle’s seizures have reduced to five to ten a day, her cognition has hugely increased and we have been able to wean her off of these strong meds. It’s incredible what Isi has achieved, against all odds, and we are incredibly proud of her. This would never have been possible without The Daisy Garland providing the ketogenic dietitian to the NHS." Please click here to read Isi's story