Evie-Lilly is a beautiful, intelligent and adventurous 7 year old girl with an ability to bring light to the darkest of places. She was born with severe brain damage due to multiple strokes that have affected her movement and sight profoundly. Evie has been diagnosed blind and has quadriplegic cerebral palsy so cannot walk, sit, crawl. She is non verbal and has a life limiting/threatening condition.
Evie's brain for some reason unknown wasn't made correctly. The blood vessels are narrow and flimsy. Major vessels are missing. As a result she has incurred blockages in the blood vessels causing strokes to numerous areas of the brain.
Evie has had 2 brain operations to try and encourage oxygen to the brain by drilling holes into her skull in the hope vessels on the outside would thread through into the brain to get it much needed oxygen to prevent any more strokes.
This surgery has prolonged her life.
Evie has also had a heart operation at a month old to correct an open duct. It was at this operation her brain condition and profound disabilities were picked up. Evie has also had a Nissen fundoplication to tie her stomach to stop severe reflux and a gastrostomy so Evie could feed via a tube into her stomach.
Evie has a host of medical problems such as increased saliva and has had surgery to limit this production. She also has bronchial malacia, meaning her left bronchial tube that goes to her lung is extremely floppy so air can become restricted, meaning breathlessness is something she struggles with and chest infections.
Evie also experiences seizures and dystonia attacks.
However despite all this, Evie is a happy little soul who loves music and stories. She thrives off praise, using her frustration to gain skills we have worked hard to get. Evie explores through touch and sound to "see". She has a Bucket List... Her "living list" to experience everything this world has to offer.