Meet Our Families

On this journey, you are Never Alone.

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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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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Our blessed angel – Ayaz

Ayaz was diagnosed with LGS when he was 17 months old, our lives turned upside down knowing he would never reach his milestones. We tried numerous medications and fortunately were able to find some relief with holistic. Then after three…

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Finding international support for my LGS loved one

Meet Dominic

My name is Jackie and I am the proud mother of an LGS warrior, Dominic, who is 11 years old. Dominic loves swimming, Legos, Superheroes, playing soccer, and Minecraft. Dominic experienced his first seizure when he was 3 years old….

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