Personal Stories

Against All Odds

Zander's Story

At 14 months old Zander had open heart surgery. As a result, 2 weeks post-surgery Zander suffered cardiac arrest. Before this, he was a thriving little boy. Then on December 19th, his life changed forever. We spent 4 months in…

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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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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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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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Meet Olive

Our little unicorn

I’m a mom of four and my sweet Olive is our rainbow baby and our little LGS warrior, who is now four years old. She was a healthy newborn who underwent cardiac arrest at three months old and had anoxic…

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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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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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