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Thanks for taking the time to visit my Just Giving page. Please take a minute to get to know and support Julia.
Julia was born on the 15th November 2013. Pregnancy and natural delivery without any complications. Julia was growing nicely and developing like every newborn. She was sitting on her own when 5 months old, first word at 10 months, first steps on 11 months. We could not be happier.
At the age of 17 months Julia has regressed. Stopped talking, had problems with walking, hand use. She has lost the eye contact and closed herself far away in her own world. The battle has started, endless doctors and tests.
Then on the 24th April 2018 the diagnosis came. Julia has a rare genetic disease called - Rett Syndrome. There is no known cure for Rett Syndrome, so treatment focuses on managing the symptoms. Julia is working hard and we are doing our best to slow the progress of her disease. Currently Julia has problems with tail of pancreas, cerebrum, posterior wall of stomach, liver, pancreoduodenal area, intestine, vegetative nervous system of thorax, ventricular area of the heart, tight muscles, loose joints and many many more which affects her everyday life.
We adhere to a very strict diet and Julia attends numerous therapies, which has improved her balance, walking and a hand use. Julia has recently started saying few words which is unusual but wonderful. A term you will hear is Silent Angels this is due to their illness shutting them off and losing the ability to speak, walk and bodily functions. Girls suffering from this condition were until recently considered to be autistic, deeply impaired, deleted by doctors. Today it is known that they are often completely healthy minds, sealed in a failing body, really wanting to communicate. However, they may do so only in one way-eye movements due to the muscles just above the eyes being able to move.
All good things that happen only prove Julia’s strong will to fight this disorder and how important the regular and intensive therapy is. Julia attends Chiropractic Clinic, has private physiotherapy and Speech and Language support. This come at a high cost of £100 per hour. As this is considered preventative the NHS does not deem it as a necessity.
Julia is happy and fun loving girl who deserves better quality of life. Please help support Julia in this long journey and help to make everyday a better day.
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