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Living the LGS Life: A blog by the LGS Foundation 

April 10, 2020

As many in the LGS community may know, Andee and Kannon Cooper are two close friends of mine who introduced me to LGS.  Attending conferences with Andee (mother of Kannon who has LGS) and getting to k...

April 4, 2020

24 Hours in the COVID-19 Ward with Marie 

We are taking the COVID-19 pandemic very seriously in our house. This is because, even under the best of circumstances, our youngest daughter, Marie, is medica...

March 4, 2020

Most (none?) of us enter into the parenting world expecting to do it alone but, in many cases, that’s exactly what happens. A new world is created when you and your child’s other parent decide you can...

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.


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