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The National Information Centre for Metabolic Diseases |
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Galaxy Tribute Funds
I would like to dedicate this Galaxy Tribute Fund in memory of my daughter, Katheryn Rachael. Katheryn had a normal healthy life until she reached the age of 16½, whereupon she developed a twitch in her leg, which then developed into occasional seizures. She became hospitalised in September 2005, when the seizures became more frequent. She then went into status epilepticus and had to be put on a ventilator in the intensive care unit (ICU). She was then sent from Leicester to the specialist Walton Centre in Liverpool. After three weeks at Liverpool, we were told that Katheryn has some sort of mitochondrial disorder. She was then airlifted back to Leicester as we were told they could do no more for her than Leicester could (trying to control the seizures the best they could). By this stage she had had 3 strokes which left her blind. Her boyfriend Tom proposed to her on Christmas Day. At her best, she was happiest listening to her CDs (The Sound of Music being her favourite). We were still at the stage without a diagnosis. She continued to be totally hospitalised in Leicester going in and out of intensive care until eventually, in June 2006, we got a diagnosis of Alpers Syndrome. The hospital kept Katheryn comfortable whilst we looked into hospice care. Katheryn finally passed away peacefully on 8th July 2006 in ICU. Rest in peace, love Dad (Phil), sister (Becky), Tracey (step-mum) and her children and the Chapman family (Tom and everyone).
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