Hi, my name is Preston Weaver. I am 7 years old and have Lennox Gastaut Syndrome. I started having seizures at about 5 months old. Despite numerous antiepileptic medications, I have had seizures every single day of my life since. Currently, I have 60-80 per day.
We have tried 10-12 different medications, some have helped but we have yet to gain full seizure control. The seizures that I have cause regression and thus I am basically a 2 month old in a 7 year old’s body, unable to walk, talk or even hold my head up. Although there is so much I can’t do, there is so much I CAN do. I can light up a room with my smile! And I can turn any bad day into a good one with my sweet personality. I deserve a chance to do things I have never been able to do.
If we can stop the seizures, the possibilities are endless!
Photo by Kim Skriba