BiographyHarmony was born all ok you would never of known this girl was going to have bone diseases in her whole body (besides hands and head) we started to realise something was wrong at 8 months of age she just seemed very little wasn't much to us back then tho just thought she would be a slow grower, her teeth also took a very very very long time to grow and come in, then at 17 months of age we knew something was wrong with our beautiful girl her back just didn't feel right and her legs started to bow, so off to the doctors we went, they sent her for x-rays immediately and those results were along the lines of a metaphyses dysplasia disease from their on Sydney WestMead Children's hospital doctors contacted us because her disease is extremely rare so in 2013 in march we went and met all these beautiful doctors who done more x-rays and so on, they then said yes still a metaphysease dysplasia disease but also enchondromatosis as well they also said she would have some kind of dwarfism as she isn't growing but this year 2014 we went back to her doctors in May they ran some more things thinking they would know what Harmony definitely has they then put down spondylolepimetaphysesdysplasia disease and a dssylolepimetaphysesenchondromatosis dysplasia disease...
Now we just got back from her doctors again, mind you we live in Grafton so we travel to Sydney for her appointments which is 630ks away from our home so their and back we do 1260ks, she had another appointment in August 2014 just gone and they have now asked us to have her on a research team due to them not knowing at all now what she has or to test for so now they start at the begining and basically test her for EVERYTHING, her legs are getting bad and her hips we also saw her surgeons while their as well and they have said she needs surgery but it may be critical due to us not knowing everything she has got could aggrovate her diseases so we will be back in Sydney again in a month or two for her to meet more suregeons and specialist to see what we are gonna do for her while she also under goes all her test to try and determind what she has, she is 3 years old and is the most beautiful little girl in this world!
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