Tell us about yourself and the patient in your life:
Ella is 4 years old and lived in Upstate South Carolina. She went to be with Jesus on Sunday, June 27, 2021. She was the most amazing little girl, and the strongest person we have ever known. We love her so much!
Ella Grace was born in Greenville and was an explorer at heart. She loved to go new places, and was always ready for an adventure. She enjoyed car rides, music, and going camping in her RV with mom and dad. Her absolute favorite activities were swimming, especially aquatic therapy, and swinging in her little blue swing on the back porch. Her favorite foods were marinated salmon, quiche, and cheese, and she could eat her body weight in cheddar!
Ella Grace was a cherished student at the Meyer Center for Special Children. She absolutely loved her time there, and worked so hard in all her classes and therapies.
Ella started seizing when she was 4 months old, and her seizures generally came in clusters every three weeks. Despite multiple different daily medications, as well as several rescue and as-needed meds, Ella’s seizures were very difficult to get under control, and she ultimately passed away from SUDEP.
Ella was nonverbal, but could make her needs known through some vocal sounds, and some gestures, such as reaching up her arms to us when she wanted to be picked up, which was often. She loved to make happy noises and would make singing noises that were so so special to anyone who heard them. She had started using a few signs at one point, and had even said mama and dada, but due to her frequent seizures, she lost those skills around the age of two and a half. She required thickened liquids and modified textures but could take everything PO. She walked independently, starting around 22 months old, and loved to climb up stairs.
What is your hope for the future for your loved one:
We know our precious Ella grace is safe and whole and healed in heaven, and we can’t wait to join her there someday. My hope for the future of other sweet girls with SMC1A is that we can find a treatment, and better ability to control their seizures in the meantime, so that they can live a long, happy, healthy, and joy-filled life, seizure free.
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