1997 was a memorable year in many ways – both good and bad. My mum passed away suddenly. David and I bought our first house and were working all hours on its renovation. When… “yippee! It’s a blue line! We’re going to have a baby!” A moment of pure joy which will live with me forever. I had an untroubled pregnancy until my last five weeks when pre-eclampsia reared its ugly head.
Our baby was induced three weeks early, a little girl we named Daisy. Daisy sailed into our lives and hearts in the early hours of Saturday 11th April 1998. A vintage year! When the midwife handed Daisy to us we were amazed at the little wise eyes that met ours. Daisy was an ‘old soul’ from the very start.
We left the hospital as all new parents do beaming with pride and overwhelmed by the deep love we felt for our beautiful little daughter. We were a family – our life was complete.
Daisy was in bed with us one morning when David noticed her left arm trembling slightly [Todd's Paralysis]. It didn’t last long but afterwards she wasn’t able to use her arm properly for over an hour, after which time things returned to normal. This happened again a week later so I told our health visitor who advised me to see our GP if it happened again.
On 1st 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 raced to hospital and after various tests the medical team decided to keep Daisy in overnight for observation. Just after 4am the following morning Daisy went into status epilepticus. The seizure started in her left arm, spreading to her left leg, then moved across to the other side of her body, limb by limb. It lasted for forty five minutes. It felt like a lifetime…
We spent a very long time in intensive care where endless tests were carried out. Eventually we were transferred to the children’s ward. Daisy continued to seize. Two weeks later Daisy was discharged from hospital on anticonvulsant medication.
We were informed that Daisy had a rare and complex form of epilepsy – Severe Myoclonic Epilepsy (Dravet Syndrome). She was just five and a half months old.
Each new medicine we tried brought with it a new type of seizure and a whole host of unwanted side-effects. We felt trapped in a living nightmare never knowing what each day would bring or how it would end. David and I struggled massively to cope as new parents with a ‘special needs’ child. We went to bed at night wondering how we managed to get through another day, and would wake the next morning wondering how we would survive the day ahead. Through it all it was Daisy who kept us going. Despite the horror of what she was going through – the cocktail of numbing medication and the constant seizure activity requiring frequent admissions to Intensive Care; our daughter, our beautiful, brave, courageous girl was always loving and always smiley.
Daisy’s longest 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 control her epilepsy.
We hated what the ineffective anticonvulsant medication and side effects was doing to our daughter. With every mouthful of medication Daisy swallowed we watched her slip away from us. The prescribed drugs offered limited seizure control, if any, and we knew we had to do something – but what? Desperate to find some form of seizure control I marched positively down the ‘alternative’ route, amongst other areas researching vitamins and minerals - leaving no stone unturned. Sadly, nothing we tried came close to giving us the seizure control we craved.
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I spent most of my waking hours looking for an answer. After months of research I stumbled upon something called the ketogenic diet. I had never heard of it! Could a natural, drug-free food-based diet really give us the control we were looking for? I was determined to find out…
In November 1999 I met with Daisy’s neurologist and explained our fears about continuing Daisy on medication. I made her aware that I had researched the ketogenic diet and after much discussion it was agreed to put Daisy on the diet. In January 2000 Daisy’s ketogenic journey began. After three small ketogenic meals Daisy started producing ketones and as a result two days after starting the ketogenic diet her seizures reduced both in frequency and duration. We were beyond amazed. Already we could see a more relaxed and contented Daisy.
WHAT IS THE KETOGENIC DIET
As Daisy’s seizures became milder and less frequent, David and I began to relax. Things were going well on the diet and after a slow and steady wean Daisy took her final dose of anticonvulsant medication in July 2000. The relief we felt reaching for the medicine bottle one last time is impossible to put into words.
We found a wonderful nanny for Daisy so that I could return to work on a part-time basis, bringing some semblance of normality back into our lives. For the following six months Daisy was seizure-free. Her speech developed from babbles to actual words. At one point she had a vocabulary of forty-five words and was able to identify colours, numbers up to ten and recognise and recite letters of the alphabet. She loved running, interacting and playing and for a moment in time life was good. Little did we realise what was lurking around the corner…
In February 2002 as the result of a medical blunder Daisy received hospital treatment for a condition she did not have. The result was catastrophic. Daisy’s seizures returned with a vengeance and recovery was painfully slow. Tragically, Daisy never regained her vocal skills and never completely regained seizure control.
Daisy remained on the ketogenic diet until 13th April 2004. At 7pm after her bath, I tucked Daisy into bed and kissed her goodnight. We checked on her hourly throughout the evening as we always did. When David went to check on Daisy in the early hours of the morning, to his absolute horror he found that she had passed away, gently, in her sleep.
It was later explained to us that Daisy died from SUDEP (sudden unexpected death in epilepsy).
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 too-short life. A little girl who wise beyond her years bore her condition with the most incredible bravery and grace. A little girl who touched the hearts of everyone who met her. Daisy’s absence has left an enormous 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 sincerely hope that through her charity, she will help improve the lives of many other little children and young adults who suffer with epilepsy.
The Daisy Garland charity was born in November 2004 to keep Daisy's memory alive and to help other little children like her. The charity fund an increasing number of ketogenic dietitians/dietetic support workers all of them working in NHS hospitals treating thousands of children who suffer from drug-resistant epilepsy with the ketogenic diet. The Daisy Garland are the only charity in the UK offering wrap around ketogenic support as well as funding full-time ketogenic dietitians working in NHS hospitals offering a free ketogenic service nationwide. Each full-time dietitian costs c£48,000 pa.
In early 2005 to our huge excitement I discovered that at the age of forty-one, I was pregnant again! One sunny Wednesday afternoon in September, Grace Olivia was born to two delighted parents. Since that day Grace has brought immense joy back into our lives. We feel fortunate to have been blessed with two wonderful daughters.
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