Children living with Batten Disease CLN5 are truly the unicorns of rare diseases. Diagnosed between the ages of 4-7, life expectancy is unknown but most children do not reach late teen years. Currently about 30 children worldwide have been diagnosed with this form of Batten.

The goal of this campaign is to raise awareness of CLN5. We also would like to donate proceeds to newly diagnosed children who need extra help through a rapid lifestyle change.

To learn more about what these kids are facing, visit LivingBatten.com or BattenDiseaseNews.com.

Our daughter Ryan was diagnosed in April of 2021 at 6 years old. When she was little, she would say, "What you said?" whenever she needed something repeated.