Amber is aged 4 from Ongar in Essex and has cerebral palsy, epilepsy and vision and hearing loss.
Amber was born with no heart beat and had to be resuscitated. She had 2 blood transfusions in the first 10 minutes of her life, and then was rushed to hospital to have “cooling” treatment, which she was on for 72 hours. This seizure caused extra trauma to her brain.
During this time the doctors did lots of tests. We were informed that Amber wouldn’t survive being taken off her life support machine. None of her organs would work, while she would not be able to move, breath, feed or drink on her own. She would be in a vegetative state and we were told that her life span would be a maximum of 10 months, if she did survive at all.
So on day 5 of her life we made the heart wrenching decision to turn off her life support machine. Amber is a survivor and had other ideas and has continued to prove the doctors wrong. All her organs work. She moves, breaths, feeds and drinks on her own. She is our fighting little angel and is a happy content little girl.
We have daily physio and sensory play therapy that she has to do continually and intense courses to enable her to reach her full potential and meet her mile stones.
Our dream is for Amber to have a good quality of life and to try and limit the amount of operations and hospital appointments. She had 198 Nhs appointments with specialists last year alone! To do this she needs to have constant physio care to maintain a full range of movement, and we hope we can give Amber the best support and help possible to achieve this.
Thank you all so much for your support x