My daughter Amanda started having seizures when she was two years old. After many hospitalizations and failing 12 medications, she was diagnosed with LGS, and our quest to find a treatment that worked for her began. Amanda’s seizures always came…
Valerie is smart and sassy. Loving and thoughtful. She gives the best hugs (on her terms only…lol). Valerie never gives up. She loves music, movies, coloring, reading, art, theater and shopping. She has the prettiest brown doe eyes ever. Valerie…
You Can Make a Difference for Families Impacted by LGS!
This holiday season, help us bring hope and essential support to those impacted by Lennox-Gastaut Syndrome (LGS). Your gift provides critical resources, education, and connection for families who need it most. Our goal is to raise $50,000, but we’ll only reach…
Robbie had his first seizure at 6 months old. It was a tonic-clonic that lasted an hour. At 9 months old, he started having infantile spasms daily. We never truly got control of his epilepsy after that. The early days…
Born in early October 2010 with a love for Halloween, Selena has been on the move ever since. She is labeled as non-verbal, but she’s not quiet. She can’t walk independently, but crawling and knee walking independently doesn’t slow her…
We are committed to helping LGS Families impacted by natural disasters get the assistance they need. The following list contains links to resources and third-party websites that specialize in emergency disaster relief. You can also email us at familysupport@lgsfoundation.org and…
Matthew's Journey with Lennox-Gastaut Syndrome
Matthew entered the world during a long birth. Intervention was needed, and the use of forceps resulted in a hematoma that thankfully diminished over the weeks following. He was a beautiful, healthy, happy baby and we were sent home with…
Theo is my favorite topic of conversation. The word that comes up first whenever I talk about him is sweet. He has a gentle, calm nature and the world’s best smile. I could hug him and smother him with kisses…
Nyla's Story
While in utero, Nyla had a fetal ovarian cyst that grew to almost 2 inches throughout the pregnancy. The solemn and uncertain look on the doctor’s face when he saw it made my heart sink and I was overcome with…
The Advocates for LGS team is a small but dedicated group of caregivers who recognize the need for change at the systems level to provide a brighter future for their loved one with LGS. Every August during the congressional summer…
