Our Story

Once in a lifetime you meet an Emily....

Her strength, her courage. A true inspiration to all who knew her.

Emily was our daughter, sister, niece and friend. She was different - not in a cognitive or physical way but in the way she approached life, the way she made people think, the way she helped people be better.  

Emily was born with a congenital heart disease, Tetralogy of Fallot, on August 28, 1996. We learned some hard lessons along the way when dealing with a child with medical hurdles. The two greatest challenges were:

  • An educational system that needed to be reshaped in order to support the unique educational needs for Emily.

  • Set protocols established by medical professionals and hospitals that were not tailored to Emily. (They needed to focus on Emily, not the model that they were used to.)

They fought us tooth and nail at times. They didn’t realize this wasn’t an ordinary girl - this was Emily. 

She proved them wrong time and time again - every challenge overcome with courage, every day met fearlessly, and every goal approached persistently. Emily lived a life full of “normality”, love and many accomplishments during her time with us. After a series of complex surgeries, she passed away on December 21, 2009. We learned a lot from Emily. Those who knew her were blessed; they met an angel.

We know we are not alone. Every child’s situation is unique. 

We started the Emily Thomas Foundation because EVERY child counts and deserves a chance to live their best life. Through the foundation we advocate for families in similar situations as our own and share our story, offer our knowledge and empower them with resources to make their lives a little easier. Along the way others have joined in our mission and together, we are seeing the impact our community can have.