Ethan was a busy, headstrong, loving, silly little boy who was growing, learning, laughing and playing just like most children do. At the age of 2 years, 9 months, Ethan began having seizures just three days before his brother and sister were born. From there Ethan began a journey of blood tests, imaging scans, numerous medications, therapies and a special diet, all the while he continued to rapidly decline in all areas of development.

A little over a year later, Ethan was diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), more commonly known as Batten Disease.Batten Disease is a rare genetic, and currently always fatal, neurodegenerative disease where a child, who is born seemingly normal, begins to suffer worsening seizures and dementia, along with a progressive loss of vision, speech, feeding and motor skills until they become completely bedridden. Sadly, the disease eventually takes the child’s life, just as it took Ethan’s on March 14, 2013, at the age of 4. There is currently no cure, and there is little that can be done to slow or stop the disease, but with awareness and support for research there is hope!

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Explore the site and links to learn more about Batten Disease. Spread awareness. Donate by clicking the Donate button above. Participate in fundraising/awareness activities. Carpe Diem!