Finding Hope: Parenting a Child with Life-threatening Epilepsy

On the first morning of our much-anticipated annual family vacation, my 11-year-old daughter Emily learned that a beloved Disney actor had died at the young age of 20. A seizure took his life while he slept. Why was this significant? The obvious reasons… he was famous, my kids had watched him on the Disney Channel for years, he was seemingly healthy and he was way too young to die. The not so obvious reason for the significance of this news is that like Cameron Boyce, my daughter Emily has epilepsy. Every night before bed we hook Emily up to a “pulse-ox” machine that monitors her oxygen level while she sleeps. Why? Because the majority of her seizures start in the middle of the night whil

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The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

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