Ethan DaviesIt was May 13th, 2008, that our beautiful first child, Ethan Michael was born. He was a busy, headstrong, loving, silly little boy who was growing, learning, laughing and playing just like most children do. On January 30th, 2011, our lives changed course in a way we had never imagined. Our unexpected journey began when Ethan started having seizures just 3 days before his brother and sister, Mason and Maya, were born. From there began imaging/MRI and blood tests, EEGs, hospitalizations, medications, therapies and a special diet, all the while Ethan continued to rapidly decline in all areas of cognitive and physical development.


Ethan DaviesOn April 13, 2012, Ethan received the devastating diagnosis of a rare and fatal neurodegenerative disease called Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), more commonly known as Batten Disease. Batten disease is an inherited disorder of the nervous system where, over time, affected children suffer worsening seizures, dementia, and progressive loss of sight, speech and motor skills. Currently there is no cure for Batten Disease, and it is always fatal in childhood.


Sadly, Ethan passed away on March 14, 2013, at the age of 4. In Ethan’s short, but beautiful life, he taught many what it truly means to “seize the day” and appreciate every moment as if it was our last. Knowing there are still families out there who have a loved one with this disease, or will sadly learn of this diagnosis in the future, we are driven more than ever to “embrace time hope and adventure now,” by raising awareness, assisting children and their families, and supporting research efforts for a cure, until not another single person will have to witness the devastation of Batten Disease or other similar rare diseases. We believe that this is Ethan’s Reason.

Ethan’s Reason is a 501(c)(3) non-profit charitable organization. All donations made to Ethan’s Reason are tax deductible to the full extent of the law.

Partners in Rare Disease

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