12/21/2006 - 06/07/2020
Emma began having infantile spasms at just seven months old. We started ACTH injections right away, and she was on them for nearly three months. For a while, she did fairly well. But when she turned three, the seizures began to happen more often, and by three and a half, we received the diagnosis that would change everything — Lennox-Gastaut Syndrome (LGS).
By the time Emma was seven years old, she had been on 16 different anti-epileptic medications, in every possible combination, trying to find some relief. The few that helped came with heartbreaking side effects. They left her drooling, eyes glazed over, and almost unresponsive — but I knew she was still in there, awake and aware.
I’ll never forget the day the neurologist told us we’d be lucky if she lived to see her 10th birthday. The only things they offered were palliative care and a complete corpus callosotomy. Her liver was failing from the medications, and she wasn’t eligible for a transplant. When the neuro refused to wean her off one of the meds, I knew I had to find another way.
We live in a state that allows alternative medicine, and that was our next step — before surgery, before more sedation, before losing any more of who she was. For me, it was about quality of life over quantity.
And that’s exactly what we did.
We took the trips — ALL the trips.
We made the memories.
We loved big and lived even bigger.I have no regrets.
Emma lived 13 and a half beautiful years. She couldn’t speak with words, but she communicated in her own special way — and believe me, she always made sure we knew exactly what she wanted! Her nurses used to say she was “salty,” and they weren’t wrong — she had personality, spunk, and a spark that could fill a room.
Strangers were often drawn to her. People would approach her in public just to talk, even if they didn’t know why. They could feel her light — her loving soul reached out to everyone around her.
Emma taught us how to live in the moment, how to find joy in simple things, and how to love without limits. Her legacy is one of laughter, courage, and grace.
We will always strive to Live and Love Like Emma. 💕
– Shared with love by Emma’s mom, Shanna.
