Meet Our Families

On this journey, you are Never Alone.

Amanda’s LGS Journey

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…

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Val’s Journey with LGS

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…

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Accessible Adventures with Robbie

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…

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Selena’s Smile

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…

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A Mother’s Unwavering Love

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…

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Mr. T (aka Theo)

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…

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Finding Joy in Our LGS Journey

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…

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Sibling Spotlight

William (age 10)

My name is William and I am 10 years old. I am in the 5th grade and enjoy school. I like video games, drawing, and geography. I live in Florida with my Dad Craig, Mom Kayleigh, Brother Dylan, and two…

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Caleb Keeps Smiling

Caleb was born with bilateral club feet. We knew about the club feet and had a plan in place before he was even born. Caleb had his 1st set of casts on at 5 days old. At 3 months old,…

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Our Superhero, Dylan

Dylan is a 16-year-old, smart, sassy, and energetic young man. He loves all things superheroes and is dedicated to keeping his friends and family safe with his superpowers. Dylan made his grand entrance into this world on New Year’s Eve…

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