A Family Reunion

"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me.  It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.

We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old.  At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.