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, The Bold Joff. 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.

*may contain 2% owl

Lowe Syndrome is an ultra rare, life limiting and life threatening metabolic congenital disorder which affects mainly males (although through the quirks of unusual genetic inheritance, we now know of 4 girls worldwide diagnosed with Lowe)
Joff has just turned 20 and is a young Scottish adult with profound and multiple physical, learning and sensory disabilities and complex medical needs. He left school at 18 and moved into adult services, more about both later. Mr Effie and I successfully secured full legal welfare and financial guardianship of Joff in 2010 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.

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