Catherine was born in September 2022 a happy, healthy precious little girl a sister to 2 big doting brothers.  At the age of 8 weeks old Catherine began to have seizures and could have 15 + seizures per day.  More nights myself and my husband have slept with one leg in the bed and one out ready to jump once we sense a seizure coming.  Back in November 2023 Catherine was diagnosed with a rare genetic disorder called ‘CDKL5’ which affects 1 in 60,000.  The CDKL5 gene tells the body how to make a protein that’s needed for normal brain development. Unfortunately this also means that seizures will more than likely always be a part of Catherine’s life. We as a family would like to thank The Daisy Garland from the bottom of our hearts for giving us an epilepsy monitor, this means we can now think about moving Catherine into her own bedroom with the peace of mind that she is safe.  We would like to highlight the generosity of The Daisy Garland and the amazing work they do to help families all over the UK.  We would urge anyone reading this to spread the word of The Daisy Garland and also our little daughter’s condition; as like many other families the more people that understand CDKL5 the more doors are opened  to help improve Catherine’s quality of life.Thank you from Catherine’s Mum, Dad & big brothers x