Episode 25: Xavier and Adrianne - Schinzel Giedion Syndrome

When Adrianne and her husband had their son Xavier, they discovered he had the incredibly rare condition called Schinzel Giedion syndrome. Children with this syndrome typically don't live past two years old, but Xavier beat those odds and lived to be almost eight years old. Earlier this year he died, just shy of his 8th birthday. In this episode Adrianne talks about his diagnosis, his life and his death. 

Om Podcasten

This show tells the stories of the children and their parents who find themselves in that one in a thousand, or one in ten thousand, or even one in a million position of having a child with special needs and how they come to cope. Finding those odds apply to you and your child can be one of the most isolating and terrifying experiences of your life. But then sometimes it can also feel like winning the lottery.