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

Together in the Battle Against Batten

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.

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Finding Peace

Finding Peace

Sara has had an emotional journey raising her daughter, Gabriela, who was diagnosed with CLN7 at age six. In the years since diagnosis, her family has 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.

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The Search for Answers

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.

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