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!

To advance research, education, and public awareness of Batten Disease and Rare Disease and to support individuals and families who have been affected by Batten Disease and Rare Disease.

Time: Spend it with those you love and those who love you! Especially when faced with a life-limiting disease, every moment matters.

Hope: Raise awareness, find a cure! While there is currently no cure or treatment to reverse Batten Disease, hope grows through the funding of promising research.

Adventure: Share an experience, make memories! For a person with a significant medical condition and their loved ones, even the simple things can make all of the difference in their quality of life. 

Now: Seize the Day! Whether grieving the loss of loved ones or still in the fight, families are affected by Batten Disease and other rare diseases every day. Support, research, and a cure cannot wait!