BiographyBethany was born a floppy child, but the hospital paediatrician felt it was normal and that she'd be alright. Eight weeks on she was still floppy and our health worker became concerned and advised us to see a doctor. This led to many tests including an MRI which were all to no avail. Beth finally had a muscle biopsy aged twenty two months and was given a diagnosis of Merosin Negative Congenital Muscular Dystrophy. At the age of three and a half Beth came down with a life threatening chest infection and was sent from Ipswich hospital to Addenbrookes paediatric intensive care unit. Following ten days there, mostly spent on a ventilator, she pulled through and was sent home with a bi-pap machine to assist her breathing. She still uses it to this day.
Beth had a gastrostomy port fitted when she was three years old to assist with her feeding as she was seriously underweight. She continued to have chest infections with every cold she caught becoming potentially life threatening, yet managed to recover from them with the help of chest physio, determination, the bi-pap and a cough assist machine.
Over the years of being a full time carer to Beth her father Kevin has become a specialist in many techniques that now mean that visits to hospital, or at least hospital stays, are very rare. Most importantly he has studied chest physiotherapy and this helps to prevent colds from becoming too serious, even though they do always seem to find their way to her lungs.
At the age of twelve Beth had a back operation at Great Ormond Street Hospital to help rectify scoliosis which had become a serious problem, as the twisting of her spine was affecting her internal organs. It was a major operation which involved her spine being fused and two titanium rods being fitted to add support to it. The recovery was painful and she was brave and strong throughout, emerging from the process with better posture and, to her delight, the ability to dress in pretty and feminine clothes in a way that she had never before been able to do in the past due to the chunky brace she had previously had to wear for support. It was a fun way to begin her teenage years! She also discovered that her vocal abilities became a little stronger as a result of her internal organs being given the space they needed to function to the best of their ability. This was another great source of happiness to her as she loves to sing.
Beth is now fourteen years of age and, having missed so very many years of schooling in her earlier years, has achieved the remarkable feat of just having embarked on the study of five GCSE's at a mainstream school. She enjoys school life and after years of contact with health care professionals being her main source of 'socialising' she is now thrilled to be forming friendships with more children of her own age and is growing in confidence with each day that passes.
Beth has always been a bright spirited child who spreads joy wherever she goes. She loves helping the local Children's Hospice, The Treehouse (part of EACH), with fundraising initiatives and enjoys being part of the community, family centred atmosphere that The Treehouse provides.
Beth would like to become a fashion designer and currently practices on her Monster High dolls and is also teaching herself at home to learn techniques in art, a subject that her school were unable to facilitate her doing. She believes in living life to the full and focusing on the 'cans' in life rather than the 'can'ts'. We might be biased, yet it seems fair to say that she is truly inspirational.
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