A few years ago, we were nearing the 20 year mark of Lennox-Gastaut Syndrome. Essentially, we were at the point where things were just "standing still" in the ongoing quest to find relief from seizures and a happier place for our son, Aaron. Of course, things standing still are better than things getting worse, although “no change” also means no improvement. It was pretty depressing every time a doctor ran out of things to try or when they seemed to give up. In this leg of the journey, we were on our fourth neurologist. Each one so far was at the top of their field and the chief of their institution, yet they would run out of ideas. It felt like standing in a hallway with many doors, all of which were shut and locked.
Facebook was just taking root in my life and I made a new connection with the LGS Foundation and became part of their Facebook group. It was so interesting and informative hearing comments and questions from other caregivers on things that were so relevant to our family. "Finally", I thought! "There are other people out there who really know what we are going through and who really understands"! Doors that were once shut tight and locked were beginning to unlock and invite us in. It was a whole new experience to find ideas and answers from people just like us, rather than total reliance on the medical community.
One day, a post came up announcing a scholarship offer for the upcoming LGSF conference in Cerritos, California. It seemed too good to be true, but I filled out the application anyway. “You have been awarded a scholarship,” stated the email that followed weeks later. Really?! I could hardly believe that our trip and stay was covered as there was no way we could have funded the entire trip for all three of us, especially coming from New York State.
We ran through the open door that was before us. We were completely blown away by the entire conference - how we were accepted and treated, and all that we learned and experienced. We had new ideas to try, new questions for our doctor, and new hope! We met knowledgeable and caring professionals. plus formed life-long precious relationships with many parents and caregivers that continue to this day. These relationships are priceless to us and we want to invite others into the same hope and experience.
Since then, we strive to go to every LGS conference and encourage anyone we meet involved with LGS to go. If you have never attended the conference, or even if you have, I hope to see you in Orlando. The dates are November 10th- 12th, and the scholarship application is now open!
Please ‘cmon in… the door’s open for you!
Darla Davison, Mom