Introducing Stephanie Stewart
As Stephanie’s mum I have decided to start a charity for her called ‘Steps for Stephanie’. The aim of the charity is to raise funds to enable Stephanie to have access to aids that will make her more independent and give her a better quality of life. As a mum I worry about who will care for Stephanie if her parents are not around.
In May 2008 Stephanie collapsed at home and was rushed to Gloucestershire Royal Hospital her heart had stopped beating and she had to be shocked to restart her heart, and suffered a loss of oxygen to the brain (a stroke). Strokes are the major cause of childhood deaths in Britain.
Stephanie was transferred to the Intensive Care Unit at Bristol Children’s Hospital where she was put on a ventilator. She was found to have an undetected hole in the heart as well as a condition called Arhythmogenic Right Ventricular Dysplasia. This basically means her heart does not beat regularly and will at times stop for short periods. No one quite has the last piece to the jigsaw as to why this happened.
I remember clearly one Sunday morning a consultant telling us that this was as good as we could hope for, and the feeling of blame, grief and despair that washed over us. However as we now know Stephanie is a fighter, and coupled with the excellent care she received she fought back. After many operations including repair of the hole in the heart, tracheotomy and the fitting of an internal cardiac defibrillator Stephanie started to make slow progress.
In late September 2008 Stephanie was moved to the Barbara Russell Unit at Frenchay Hospital for rehabilitation. This is a specialist unit for children with neurological problems and each child has a personalised programme of rehabilitation. Stephanie goes to school in the mornings, followed by Speech and Language Therapy (this has enabled her to learn to swallow again and she can now managed three liquidised meals a day. After that comes Physiotherapy sessions, where Stephanie learns to re-build herself to help with balancing etc.
We are all hoping that she will be discharged in January 2010. We would very much like her to be granted a place at St Rose’s School in Stroud, which has a warm family feeling to it and we believe will be of great benefit to her.
Our first fundraiser is a Quiz Night in Leonard Stanley which has amazingly sold out, and a Barn Dance is planned for June next year hopefully in the Cheltenham area. I am also in training for the Bristol and Stroud Half Marathons.
Louise Cooper
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