Hi, I'm Alison and i'm a novice blogger!!!  So please bear with me as I attempt to share our story with you.  I have decided to start this blog as we have just received a genetic result through the DDD study for our Son, Tom, who is now 22.  It's been a long journey and I plan to share it in stages.  I have been inspired to do this as the first place I went when we got our diagnosis was the web and all I found was complex medical research notes and very few personal experience items.

Please clink the links above and 'More' to see all of the pages.

Our journey starts in 1996 and the discovery that Tom has a de novo change in his HECW2 gene came this year  (2019)