My Story
When my brother was born with TAR syndrome my parents were told it would never happen again. Like most doctors who deal with TAR syndrome they were out of their depth and thirteen years later I was born. (with a "normal" sister in between) However unlike my brother when he was born my platelet count was seriously low and I could have died at any time (at that low a level there is a risk of bleeding in the brain and a few other places). The only thing that stopped that happening were platelet transfusions every three days for nineteen months. The immediate danger to my life was over.
While not life threatening I also had a weakness in the limbs on my left side, my knees bowed outwards and a tightened left hamstring affected my walking. the Hamstring problem was mostly fixed in an operation I had when I was very small. The knee problem has been slowed by having operations every few years and a caliper (metal and plastic splint) to stabilise them. On the 8th of November 1999 I had what will hopefully be my last op. It used Ilizarov frames to get my hip knee and ankle on each leg in alignment, permanantly straightening them and at the same time releasing me from needing a caliper.