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Nobody dreams of hearing that their baby has a catastrophic form of epilepsy. I certainly didn’t. My daughter, Lola, was just 4 months old when she began experiencing infantile spasms. At an age when most parents are celebrating first giggles and watching their babies discover the world, I was…

Like many others with rare diseases, my late son, Jeff, faced frequent medication changes to help him function as best he could. Jeff had Lennox-Gastaut syndrome (LGS), and his neurologist was always trying to find the right combination of meds to control his seizures. There were many periods when…

My son, Jeff, was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy, when he was about 9. After he grew up, he lived at home with my husband and me for a few years because we discovered it wasn’t safe for him to live by himself with his…

Unfortunately, people with disabilities are not always treated with kindness. My late son, Jeff, who was diagnosed with Lennox-Gastaut syndrome (LGS) at 8 years old and passed away two years ago at 51, encountered quite a few of those people while growing up — whether it was the girl…

After my son, Jeff, was diagnosed with Lennox-Gastaut syndrome (LGS) in 1980, my main objective was to keep his life as normal as possible. Jeff loved all sports. He was a very active boy, learning to ride his bike at age 5 and swim at 6. He signed up…

Things don’t always go how you expect them to. My introduction to Lennox-Gastaut syndrome (LGS) sadly came through my son Jeff’s diagnosis at age 8 in November 1980. At the time, it was just referred to as uncontrollable seizures. Jeff was born on Sept. 7, 1972, with no…

Last week, my son, Brian, started sixth grade. With the elementary school years officially behind us, it is difficult for me to fathom how quickly time has passed. My little boy is now taller than his big sister and as tall as his mom. I even see hints of a…

Caring for a loved one with Lennox-Gastaut syndrome (LGS), as we do with our 11-year-old son, Brian, comes with many challenges and limitations. Simple outings that many people take for granted, like taking the family out to eat at a restaurant, can be very difficult to do to make…

Although my 11-year-old son, little Brian, has Lennox-Gastaut syndrome and is nonverbal, he lives and behaves like a royal prince. His home is his kingdom, and with me as his personal bodyguard, we march around the premises all day. After much meandering, I can tell when hunger sets in…

As I sit in rush-hour traffic, a hot Florida sun beams brightly through my windshield. Drivers around me jostle for position, frantically trying to shave off a few seconds of commute time. A cacophony of rumbling cars, beeping horns, and chattering sports radio fills my ears like nails on a…