In April 1998 my sister gave birth to the most adorable baby girl and she was named Daisy.   Having no children of my own, this was the closest I was going to get to being a Mummy and so I spent every moment I could with her.  Bliss didn’t come close. 

At the age of 5 ½ months Daisy was rushed to hospital, having slipped into a coma and, after several gruelling days of tests, she was diagnosed as having Myoclonic Epilepsy (Dravet syndrome): a rare, severe and hard to control form of epilepsy.  As a result, this tiny fragile infant suffered persistent seizures occurring 40 to 60 times each day.  For the following two years Daisy spent most of her life in the Paediatric Intensive Care Unit, and she presented with life threatening status epilepticus every three to four weeks.  Daisy was ‘tried’ on all kinds of anticonvulsant drugs -  each one bringing its own risk, dreadful side effects and a new form of seizure.  Despite this, Daisy grew into a truly beautiful, gentle little soul with a beaming smile and knowing eyes.  No one she met was left unaffected by her grace, beauty and undaunted spirit. 

My sister, never one to give up in the face of overwhelming adversity, discovered an alternative therapy for Daisy, a food combining diet called the Ketogenic Diet.  This had been popular in the 1920s as a ‘cure’ for epilepsy but had sadly fallen by the wayside as easy to pop pills came onto the market.  Daisy flourished, drugs were weaned, seizures waned and those closest to her started to breathe again.

This devastating form of epilepsy has a particularly high incident of death and, tragically, in April 2004, Daisy died in her sleep three days after her 6th birthday.  The loss of a child is indescribable.  I will never again kiss the nape of her neck, the bridge of her nose, blow raspberries on her tummy, nibble her rosy pink feet and hear her giggle, smell her hair or be on the receiving end of her wonderful hugs.  I now know the real meaning of broken hearted.  This appalling tragedy left us stunned. 

In late 2004, not knowing how to fill the void, my sister and brother-in-law started a charity in Daisy’s memory.  It’s called The Daisy Garland (www.thedaisygarland.org.uk). They raise money to fund a specialist Ketogenic dietician who works in the Paediatric Unit at St. George’s Hospital, Tooting.  To-date eight children with severe epilepsy are under the care of The Daisy Garland Ketogenic Dietician and are doing very well.

Daisy’s birth changed my life for the better.  Her death has changed my life forever.  Carpe Diem. 

-----------------------------------------------------------------------------------------------------------------------

To find out more, to help or to make a donation to The Daisy Garland, log on to www.thedaisygarland.org.uk