About Edward

Edward's Story

Katie and I welcomed Edward Michael Johnson on January 19th, 2011 at 25 weeks old, weighing only 1 pound and 12 ounces.  He spent almost 100 days in the Neonatal Intensive Care Unit (NICU) at the University of Virginia in a fight for his life.  After overcoming innumerable challenges in the NICU, we were able to bring our little man home on April 23rd, 2011.

His first few months at home were a bit nerve-wracking and at times scary, but Edward (and Katie and I) slowly adjusted to life outside of the hospital and Edward started to grow and develop into a happy and even fat little baby.

Then on March 1st, 2012, Edward was diagnosed with bilateral retinoblastoma, a rare pediatric eye cancer and started on his second fight for his life.  He is currently undergoing treatment for his cancer at UVA, Children's Hospital of Philadelphia (CHOP) and the Wills Eye Institute.

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