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The Story of Taylor Jones and Dancing Eye Syndrome
It all started back in May last year when we gradually noticed that 2 year old Taylor had become a little wobbly, Shortly after this, Taylor started to have trouble walking and talking Her condition was getting worse each day and she was losing all ability to walk, sit, talk and use her hands. It was truly heartbreaking to watch our little girl deteriorate so quickly when we had no idea what was wrong and no control over it. Eventually our neurologist diagnosed an extremely rare nervous system disorder known as Dancing Eyes Syndrome as it literally causes the eyes to shake and dance about. No one knows for sure what caused the syndrome to develop, all we know is that it is pure chance and not genetic. It could either have been from viral origins, where any virus (a cold, chicken pox etc) she may have had has caused her antibodies to mutate and attack the nervous system, or it could have been a neuroblastoma tumour somewhere in her body which had dissolved by the time tests for it were carried out, but had already released chemicals which had the same attacking nature on her nervous system. A full body scan with radioactive dye found no concrete evidence that a tumour had been present but as they can disappear by themselves it is inconclusive. Either way, the attack on her nervous system has caused all of her bodily nervous functions to be altered, right from the most basic motor movements. So for the past 9 months Taylor has been living on a daily cocktail of medication – steroids to suppress her immune system in case it was her antibodies that caused the illness, a separate immune-suppressant medicine, antacids as the steroids can damage stomach lining, and three different sorts of medication to help her calm down and induce sleep in the evenings as the steroids have such an extreme effect on her behaviour and temperament. At times it has been hard to recognise our beloved daughter within the unpredictable rages and mood swings that the steroids can create. We are also working regularly with Physiotherapy, Occupational Therapy, and Learning Support Services (all at City Hospital Children’s Centre) to continue Taylor’s rehabilitation as she learns every basic movement and function again, from putting one foot in front of another and sitting unaided to talking and feeding herself. One of the biggest problems we are encountering at the moment is extreme lack of sleep, the drugs to keep her stable also keep her awake and this also affects us as a couple because every night one or both of us is up for hours at a time with her. The steroid dose was reduced in February but this led to her suffering a relapse – her speech suffered again, she lost some mobility and her eyes were uncontrollably dancing again. So the steroid dose was put back up and it is back to the drawing board in terms of future options. Taylor is set to go back to hospital to have an IV steroid drip which she will have to do three days a week each month, as she cannot continue to take her current medication long-term. After this, who knows? It really depends how she responds as to what direction is taken next. Throughout this though, Taylor has not stopped laughing, and loves nothing more than exploring the world around her and playing with her beloved dolls. How many two year olds do you know who practice giving their dollies a blood test and bandages, telling them to be brave when taking plasters off?! We are now coming up to the end of the first year living with Dancing Eyes Syndrome. It’s been a hard year and we are no closer to knowing when or if all this will end and what the outcome will be for her future, as so little is known about the condition. Taylor is a beautiful bright little girl and all we want is for her to be our happy healthy daughter again. One way or another, as a family, we will get back there again. Thank you for reading Paul, Louise, Holly, Taylor and ‘Bump’ Jones
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