Stewart’s Story – told by his mum, Gemma.

Stewart was the happiest little boy always up to mischief and always with a bright smile. He was smiley, active, loved climbing, playing outside, sand, water etc. He was learning words and beginning to play.

From 6 months old his shoulders would often twitch when he was tired but doctors and Health Visitors had said it was fine.

When Stewart was 2 years old, late one Friday night, we heard a menacing scream from Stewart's room.  His body was convulsing, he was blue, staring and not responding.  It was a living nightmare.  We phoned an ambulance and he was taken into hospital.  We had no idea what was happening to our little boy, he couldn't wake up without seizures happening over and over.  He didn't look like himself anymore, he was subdued and quiet.  Within days of constant seizures, we were told Stewart had epilepsy.  We were told it was managed by medication and he was started on medication immediately, so we were hopeful that the medication would stop them, but it didn't and he seemed to be changing and losing himself more each day. Every day there were more seizures and every day we lost more of him.  

Within a month we were told that his EEG was extremely chaotic with signs of constant hypsarrhythmia.  We were losing our little boy every day before our eyes.  He stopped smiling, his mobility became an issue and he stopped interacting or engaging with anyone and anything.  He was suffering from side-effects of the medication and the seizures were relentless.  We had to grieve our little boy because he was gone. 

We had to learn how to support and make this new little boy happy and settled. Every day we tried to understand what was going on.  Why were his seizures so bad and why was he regressing?   No one had answers. He was given more and more medication.

Stewart’s needs seemed to become more widespread and more intense. Every appointment there were no more answers but always more questions. After a year and 3 failed medications we were told Stewart had drug-resistant epilepsy. The whole extent of what that meant was really overwhelming. Stewart wasn’t active, wasn’t happy and was very dazed and confused for most of the time he managed to stay awake. Seizures were every day and seizure types were evolving.
In January Stewart began to go into non-convulsive status where seizures were becoming prolonged and difficult to control. He was now having around 200 seizures a month and his quality of life was extremely poor. It was so difficult to see him suffer and be helpless. With every seizure you feel an overwhelming dread that it’s not going to stop and seconds feel like hours. We sleep in the same room as Stewart to make sure he’s always safe and we worry as to what will happen each night.

In March we were appointed a Daisy Garland funded Dietician to start the ketogenic diet.  The Daisy Garland have been an amazing support from the start. We received an amazing Daisy Welcome Box with so many ideas and resources to help us carry out the diet. Our dietician phones weekly to check on his progress and is constantly adapting recipes for Stewart.  


Stewart is still in the early stages of the diet, but within 3 months his seizures have reduced from 200 a month to 40 a month and we have been given our little boy back.

Stewart is happy again.  He is much more active and we are having longer spells out of hospital.  His quality of life has drastically improved because of the ketogenic diet!
In addition to dietetic support The Daisy Garland has provided us with a grant for a SATs monitor so we know Stewart is safe when he’s sleeping.  This monitor is so reassuring to help us with non-convulsive status.
We are also members of Daisy’s Keto Café [online ketogenic support forum] where the constant support and ideas are amazing.
The Daisy Garland has really changed all our lives and we will be forever grateful for all they do for families like ours.