Everly is our brilliant, vivacious and vibrant 5 year old born a fighter 2 months early with a rare brain condition where her brain was growing outside of her skull (frontal nasal encephalocele). Following complex brain surgery we were told we would need to wait to understand the long term impacts including her ability to walk and talk.  Everly has uncontrolled seizures so we sleep with her every night with one eye open to monitor seizure activity. Her worst episode happened during the night a year ago and it still haunts us - we thought we had lost her - I cannot get that memory out of my head… Our epilepsy nurse told us about The Daisy Garland and the terrific support they offer and since reaching out to this charity their kindness and support has been nothing short of amazing. Nikki and the team listen to your worries and concerns, they really understand what it is like living with a child where you worry about them potentially dying every day.  We were so grateful to receive a grant from The Daisy Garland for a  seizure monitor which accurately tracks nocturnal seizures allowing us to sleep easier.  Life has been a roller coaster for Everly since she was born, but she has defied every odd. She is the most brilliant child who attends mainstream primary school and doesn’t let anything hold her back!  She is an inspiration to everyone.   We want to support Everly every step of the way and The Daisy Garland is playing an essential and vital role in helping us achieve this.  We are enormously grateful for their incredible support.