Harper Leigh Johnson's Story

Keeping all those who are thinking about me updated on my progress.

Friday, July 15, 2011

I decided to sleep most of the day. I did do some of my OT/PT exercises though.

Harper: Denver, Colorado, United States; My name is Harper Johnson and I was born on May 2nd, 2011 weighing 7 lbs 3 oz. My parents began to worry about me on day 2 as I began to have seizures. After two EEG's, an MRI, and a Spinal Tap and 5 days in the NICU at Rose Hospital I was moved to Children's Hospital in Denver via Flight for Life. I spent 3 weeks at Children's, had an abundance of tests and continued to baffle my doctors. I was initially diagnosed with Ohtahara Syndrome after numerous EEG's. Thanks to a test that recently became available I have been diagnosed with KCNQ2. We are unsure of my prognosis, but my parents are hoping and praying for the best. I am trying an experimental medication called Potiga. Before I was born my brother Aidan would call me "Nezbah" as my parents hadn't decided on a name yet. Unbeknownst to them, Nezbah is a Navajo word meaning 'woman in battle'. My parents along with two other families started the KCNQ2 Cure Alliance.This is my story. www.KCNQ2cure.org

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