At 6 weeks old Carter was diagnosed with West Syndrome and early onset Epilepsy.  We started a number of drugs and soon realised that our baby boy was not responding to medical treatments very well.  We are now ten months into the ketogenic diet under the care of a Daisy Dietitian.  This diet has changed everything for Carter in so many positive ways reducing Carter’s seizures.   

We also want to say a massive THANKYOU for our SATs monitor grant. The difference this will make to Carter's safety at night is something we can’t describe. We spend every night checking on him existing on only a few hours sleep a night and we have been told that we miss so many seizures through the night as they are so quiet and unseen.   Carter has had over 5,000 seizures in his short little life so far.   He holds his breath when he has certain seizures and the SATs monitor will alert us if his oxygen levels or heart rate change, allowing us to give him the urgent care he would need.  Thank you so much Daisy Garland, your work for families like ours is truly amazing!  With love, the Johnsons