20/02/2026
SUDEP (sudden unexpected death in epilepsy) is a topic close to our hearts. As many of your know, our daughter Daisy suffered from Dravet Syndrome and tragically died in her sleep from SUDEP when she was just 6 years old. The Daisy Garland is a charity set up in Daisy's memory to help other children like her who battle with drug resistant epilepsy on a daily basis. Here is Daisy's story...
Our Amazing Daughter, Daisy - by Sara Garland
"Yippee! It's a blue line! We're going to have a baby!"
My mum passed away suddenly a month prior to us finding out that I was pregnant. As if that wasn't enough, David and I were up to our eyes in renovating a Victorian house we had recently bought and then, blast, pre-eclempsia reared its head during the last five weeks of an otherwise uneventful pregnancy.
Daisy was induced three weeks early and she sailed into our lives and hearts in the early hours of the morning, Saturday 11 April 1998. A vintage year! When the midwife handed Daisy to me we were amazed at the little wise eyes that met ours. Daisy was an old soul from the very start.
One morning, when Daisy was in bed with us, David noticed that one of Daisy's arms was trembling. At the end of the episode we noticed that she wasn't able to use her arm for about half an hour, after which time things seemed fine again. This happened again a week later, so I mentioned it to our health visitor who said to go and see our GP if it happened again.
On 1 October 1998 I was feeding Daisy her lunch when she seemed to just 'slip away' and lose consciousness. Her breathing was very faint and I was unable to rouse her. We dashed to hospital and after various tests were kept in for overnight observation. Just after 4am Daisy went into status epilepticus. The shaking started in her left arm, spread to her left leg, then moved across to the other side of her body, limb by limb. This lasted for 45 minutes.
We spent a long time in intensive care, while endless tests were carried out, eventually transferring up to the children's ward after a couple of weeks of further tests. Daisy continued to seize and was finally discharged on anticonvulsant medication.
Along with every new medication came a new type of seizure and a whole host of side effects. Life for us was like living on a roller-coaster. We never knew what the day would bring or how it would end. David and I struggled to cope in our capacity as new parents with a 'special needs' child. We would go to bed at night wondering how we had managed to get through another day and wake the next morning wondering how we would survive the next.
Daisy's longest status seizure lasted six and a half hours (the longest six and a half hours of our lives). It was at that point that I realised that Daisy was never going to get better, and that she was going to die unless I could find a way to stop the seizures.
I marched down the alternative route path, leaving no stone unturned, but nothing seemed to help. We knew we had to do something - but what?
In November 1999, I met with Daisy's neurologist and explained our fears about continuing Daisy on medication and she agreed that we could start the ketogenic diet in January 2000. Daisy went on the Classic version of the Diet and went into ketosis after 3 small ketogenic meals. After 2 days her seizures reduced, both in frequency and duration. We were amazed. By the time we left hospital, it was as if we were bringing home another child. Already we could see a more relaxed and contented Daisy.
The milder Daisy's seizures became the more motivated we became and on 29th July 2000 we threw Daisy's medication away - along with all the stoppers, syringes and tiny plastic measuring pots! We found a wonderful nanny for Daisy and I returned to work on a part-time basis. For the next six months Daisy was seizure free. Daisy's speech was really developing from babbles to actual words. At one point she had 45 words, was able to identify all her colours, numbers up to 10 and many letters of the alphabet. She loved running around and everything seemed to be hunky-dory. Little did we realise what was lurking around the corner...
Due to a medical blunder in February 2002, Daisy received hospital treatment for a condition she did not have. As a result, her seizures returned with a vengeance. Daisy's recovery was gradual in the months that followed but sadly, she never regained her vocal skills and never completely regained total seizure control.
Daisy attended a wonderful school - she was one of four special needs children in Reception Class at Hillcross Primary School, Morden. Daisy adored school and was welcomed with open arms by the caring staff. Daisy's nanny Julie now works in the Special Needs Unit at the school.
Daisy remained on the diet, without a single break, until 13 April 2004. At 7pm that evening I tucked her into bed, checking on her as usual throughout the evening. David went in to check on Daisy in the early hours of the morning and to his absolute horror discovered that she had passed away, gently, in her sleep from SUDEP (sudden unexpected death in epilepsy patients).
What can I leave you with? I will leave you with the image of a wonderful little girl who fought an uphill battle every single day of her life. A litle girl wise beyond her years who bore her illness with the most incredible bravery and grace. A little girl who touched the hearts of all those who met her. Daisy's absence has left a huge gap in our lives. A gap that will never heal or mend, and the pain of losing her will never, ever, ever go away. Daisy was, and still is, a life changer and I hope that through her charity, she can help to change the lives of many little children with epilepsy.
