So Izzy was born with a genetic disorder same as her older brother, chromosome 15q duplication. At around 4 months she started having what they thought were infantile spasms a type of epilepsy. They did numerous EEGs all coming back clear. She was still having these spasms which caused so much pain, she had 3 monthly check ups with her paediatrician checking her development, milestones and tone in her body. She was a very stiff baby, especially when getting her dressed, nappy changes ect, she constantly arched her back when being held and would cry ALOT. It wasn’t until around 9 months they diagnosed her with Dystonia and prescribed her diazepam twice daily. The parts of her body that is affected by Dystonia is generally her shoulders, neck and Jaw. She can walk but not for long periods and she gets aches and pains if she does too much, I only know this as she gets me to rubs her little legs. We still currently don’t have a diagnosis of the type of Dystonia and not sure if we ever will, they have stopped trying to figure it out or find answers! Over time she has got a lot better and has less spasms but still has aches and pains. They are worse when she is tired or poorly, or when she gets scared. She is my inspiration and is so determined I couldn’t love her anymore!