BiographyEllie was our miracle baby we had waiting 4.5yrs to fall pregnant then when she was born my world changed forever.. She was the most beautiful little girl I had ever seen, she engulfed my entire heart..
Ellie was hitting her milestones until about the age of 6-8mths when she stopped being able to roll and couldn't balance herself when sitting.. We took her to the GP and started asking questions.. We were referred to the hospital to see a pediatrician but had to wait a month to get in to see them.. On the 30th of January 2014 we went in for our appointment, we were admitted straight away as they thought she had fluid on the brain.. Ellie and I were sent down to Brisbane royal Childrens hospital by ambulance for testing.. After many tests including MRI, X-ray, angiogram and bloods, and five days in hospital we were sent home to wait.. We did get to celebrate Ellie's first birthday with family and friends, but 6 days later we were told the heart breaking news.. Ellie was diagnosed with Tay Sachs Disease which is a rare terminal genetic disease where children don't usually see there 4th birthday..
So every day since then my husband and I have made sure to show Ellie all the love and happiness in the world.. Ellie can no longer see and is almost completely paralysised, she is on 5 different medications for her seizures and choking..
Ellie is now a big sister as well and her little 11wk old brother makes her giggle which is so nice to see..
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