Ella’s Story

Ella’s KCNQ2 diagnosis brings many fears to our family; fears of the next seizure, of the effects of a medication change, of the results of a blood draw, and the list could go on and on, but the fear of the unknown is our biggest fear of all.

KCNQ2 has a wide range of development impairments so we don’t know if Ella will ever sit up, walk, or talk. This fear, the unknown, is something we struggle with daily, but her big smiles, giggles, and pretty blue eyes keep us going each day.

Our hope is that with furthering KCNQ2 research and awareness, doctors and therapists will know how to help each individual KCNQ2 diagnosis and take some of the fears away from families like ours.