Batten Disease Patient Stories

Whether you are a caregiver, family member, speech therapist, pediatrician, or other healthcare provider interested in the late infantile subtypes, CLN5 and CLN7, of Batten disease, you can learn more by reading these stories from actual families living with CLN5 and CLN7.

Together in the Battle Against Batten

Living Batten | CLN7 Family Feature Patient Story

Rishi and Hemaxi’s life changed when they noticed early signs of neurological disease in their daughter Aashi. The family is dedicated to beating Batten disease and spreading awareness.

READ FULL CLN7 PATIENT STORY +

Living Batten | CLN7 Family Patient Story

Finding Peace

Sara had an emotional journey raising her daughter, Gabriela, who was diagnosed with CLN7 at age six. In the years since diagnosis, her family worked tirelessly to make Gabriela’s life less painful and more beautiful, and to bring awareness to the community through Rare Diseases Croatia, known locally as Hrvatski savez za rijetke bolesti.

READ FULL CLN7 PATIENT STORY +

Living Batten | CLN5 Patient Story Version 1

The Search for Answers

The years before diagnosis were an endless search for Wendy and her son, Austin. Getting answers provided her family with the clarity they needed to move forward.

READ FULL CLN5 PATIENT STORY +