Charlotte started the ketogenic diet when she was 6. Click HERE to read her keto story. Charlotte's fab mum, Jo, tells us more about her Glut1 diagnosis below... 

"Charlotte was diagnosed with Glut1 deficiency syndrome in October 2018 at the age of 5. After a year of tests, and trial and failure of numerous AED’s, receiving the diagnosis was a HUGE relief. The agony of knowing your child is ill, and watching as the clinicians try to get to the root cause, leaves you feeling complicit in the treatment of your loved one as a human guinea pig. 

Once we had the diagnosis, we had read up on the syndrome (I had suspected it for a few weeks, having researched all 42 different epilepsy related syndromes), and therefore we knew that the syndrome was drug resistant. At this stage, whereas an outsider may have thought we would fall to pieces knowing Charlottes epilepsy was intractable, I in fact was delighted that there was no longer any need to ‘force feed’ her any of the medication that sometimes brought with it terrible side effects, and seemingly little relief.

Although the ketogenic diet was alien to us, we were lucky to have a great dietician introduced to us very quickly at St Georges in London, and we were introduced to The Daisy Garland the same day. We threw ourselves into batch cooking lots of meals to start with; only to find that Charlotte didn’t like some of them! So back to the drawing board. Whilst the dieticians did their best, their recipes are really based on dietetic and nutritional needs – and not on taste. Unfortunately most of them do not have access to a kitchen to test any of their recipes; but this is where The Daisy Garland community stepped in. Many of the parents on the forums have been there and done that, and are only too willing to share recipes, suggestions, and anecdotes to help you to feed your child. 

6 years in, cooking a medical ketogenic meal for my daughter is a walk in the park. We can confidently eat out in restaurants with minimal food brought from home; invites to friends houses for sleepovers and parties are easily prepared for. 

My main advise for parents and carers who have just received a diagnosis for their loved one, is DON’T PANIC! There is a wealth of support and knowledge out there for you to tap into, and lean on to. Yes we have bad days, but the change in her since diagnosis and access to the Ketogenic diet means we probably have 20 good days to 1 bad – and who doesn’t have bad days?!"

The Daisy Garland has worked in collaboration with Charlotte's school to create this fabulous film. Thank you to Marcus Culverwell, Headmaster of Reigate St Mary's, who has shared this film with over 600 schools, raising much-needed Glut1 awareness.