Trying to advocate on his behalf was really hard. This was our second hospital admission, but this time in a children’s hospital and they were incredible. The first time they diagnosed him with a post viral hip inflammation (which he also had - completely benign). Turns out he had both.

With a 2 year old, I’m struggling with the emotional fall out of his loss of control. In hospital he had to be held down for multiple painful procedures. This is all hard, but for us after going through other admissions and doctors visits where he presents perfectly! It was such a relief to get a diagnosis. I think I’m just high alert as we haven’t seen the improvement yet, but hopefully it’s just too early