Our amazing son Mason is 18, and he was diagnosed with LGS when he was 3 years old. It’s been quite a journey so far, with the euphoric highs you expect as a parent, and soul-crushing lows that you NEVER expect.
His first plainly evident seizure happened when he was 6 months old. They would number in the thousands in years to come. He didn’t hit milestones. Life spun out of control and left us in a chronic state of trauma. Fear. Sadness. Anger. Grief.
We threw ourselves with every ounce of energy we could find into therapies and medical treatments. Countless medications were tried – many that had side effects that made us feel like we were putting out his beautiful light. So many failed to help at all. Some helped for awhile then stopped.
From ages 2-4, he was on a very strict ketogenic diet. I measured every drop of highly restrictive food that I prepared and fed him, on a gram scale… for two straight years. We were so blessed that this diet did actually help get rid of one of his types of seizures, and even now, 14 years later they haven’t returned. Unfortunately another type popped up during that time, and he would be wracked by those for another 3 years.
When Mason was 7, we got lucky enough to find just the right combination of medication that gave him complete seizure freedom for the first time. In Lennox-Gastaut Syndrome, this is extremely rare. We tend to think it may be that his medications are coincidentally well suited for his specific genetic condition, an IQSEC2 mutation. Remaining on this regimen has kept the seizures away almost completely for 11 years now. That has been an incredible blessing that we know is not the norm, and we don’t take a single day of it for granted.
And yet, in 18 years, Mason has never spoken a single word. Not even “ mom”. He’s never taken an independent step. He can’t perform a single self-care task on his own. He can’t protect himself in any way. Even with the seizures under control, LGS has robbed him of SO MUCH. No amount of love can cure it. But we hope that one day, the right research can.
When your child has LGS, it can be pretty overwhelming to try to share your story. It’s a LOT, and it’s intense. I feel like in some way I’m betraying my son to admit it’s hard. But if sharing might help in making progress towards a cure… to treatments that can give our loved ones their lives back, then it’s beyond worth it and I know he would want me to.
There IS HOPE! We keep fighting because Mason is proof that “rare” doesn’t mean impossible!
-Written and submitted by: Mason’s Mom, Tricia
Powering Breakthroughs: Tackling The 3 Grand Challenges in LGS
Every family living with Lennox‑Gastaut Syndrome knows how hard this journey can be—and how deeply we all dream of better answers and brighter days. That’s why the LGS Foundation is taking on the biggest barriers standing between families and a better future. This research initiative brings families, researchers, and care teams together to move us from seizures to full lives through precision diagnoses, precision treatments, and whole‑life care.
Updated 02/11/26 (AM)