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Living the LGS Life: A blog by the LGS Foundation 

November 19, 2019

The amazing thing about experiencing hindsight is that you can have a clearer vision of the whole situation.  The problem with hindsight is the potential to allow yourself to be filled with second gue...

October 9, 2019

 When my daughter with LGS was a tiny baby, someone told me something huge. It’s funny how it seemed insignificant then. She said, “You’ll be surprised by who accepts her. And you’ll be surprised by w...

August 14, 2019

I am not a parent or family member of a child with LGS.  But I consider myself the luckiest person on the planet, because my best friend is an LGS parent.  It was eleven years ago when I first met my...

June 27, 2019

For those of us in the LGS world, we all know that the next appointment with our loved one’s neurologist/epileptologist is marked on our calendars in big, bold letters.  This is the day when we’l...

May 23, 2019

“I don’t know how you do it,” a stranger said to me, as my son, Kannon, rested in an aisle of a grocery store after a seizure.  The strangers always have a frantic way of asking to help and most certa...

April 3, 2019

Up, up, up you go, gripping tightly to the lap bar in front of you as if your life depended on it. Click, click, click you hear below, like a time bomb that could go off at any minute. You’re helpless...

March 6, 2019

While reading through the daily Facebook posts from LGS parents searching for answers, comfort or just wanting to vent, I came across one reminding me why we need one another in this insane journey.

No...

January 4, 2019

"Mum, he’s ripped the bed tent again and is climbing out”.

These are words I dreaded hearing. With an LGS child, the challenges continue from day to night. You are already familiar with the night time...

July 3, 2018

The approval of Epidiolex, the CBD-based drug approved by the FDA last week, is exciting news for both the Lennox-Gastaut Syndrome (LGS) and Dravet communities. Patients with either of these rare and...

June 12, 2018

It is early morning and Andrew and I are in our kitchen.  I’m standing at my island chopping up the tomatoes I’ve collected from my garden this week, and bagging them to freeze.  Andrew is across the...

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