A warm welcome to the blog of Team Effie!

There are 5 of us in Team Effie being displaced Glaswegians living in Fife - myself being Effie, Mr Effie, our three children; two daughters, the Misses Effie's, (senior and junior) and our son, Joff the Dark Destroyer. Joff is one of only 3 people that we know of in Scotland diagnosed with Lowe Syndrome, aka LS, OCRL or Oculo-cerebro-renal syndrome of Lowe.

Lowe Syndrome is an ultra rare, life limiting, life threatening metabolic genetic disorder which affects boys (although through the quirks of genetic inheritance, we now know of 4 girls worldwide diagnosed with Lowe's).
Joff has just turned 16 and is now a young Scottish adult with profound and multiple physical, learning and sensory disabilities and complex medical needs. We are approaching transition out of school at age 18 into adult services as well as currently seeking Welfare and Financial Guardianship for him under the Adults with Incapacity Act (AIWA) 2000.

I'm keeping this introduction fairly brief now as I don't want to give away all our secrets yet… you'll have to tune in regularly to find out more about Team Effie, Joff the Dark Destroyer and what it's like to parent someone like Joff.

There will be much laughter and tears as well as some shock and disgust. Perhaps even some hummus occasionally.

And most of all, it *may contain 2% owl.