Jack

Living With Batten Disease

Jack was the perfect baby, fulfilling his parents' dreams. An amazing big brother to his twin siblings, he is kind-hearted, infectiously cheerful, curious, intelligent, and hilarious. In first grade, despite excellent reading skills, his parents noticed a concerning decline in his vision over a short period of just six months. An ophthalmologist's examination was indeterminate, and his vision continued to deteriorate. A subsequent visit to an optometrist and the provision of glasses still proved insufficient.

Further investigations, including hospital stays and extensive testing, yielded no answers. Genetic testing at Duke University finally revealed a devastating diagnosis: Batten disease CLN1, a rare and fatal neurodegenerative disorder. With no known treatment or cure and limited specialist expertise, his parents embarked on a relentless quest to provide the best possible care and explore experimental therapies.

Despite the overwhelming circumstances, the family has been buoyed by the love and support of their community. Jack, remarkably resilient and strong, remains aware of his deteriorating vision but never complains. His school provides essential support and accommodations as the family braces for the inevitable progression of the disease. Guided by faith, family, and community, they face each challenge with unwavering determination, embodying the spirit of "We Do Hard Things".

To learn more, visit https://youtu.be/uSax38xHqak?si=NRTpPjU_fpP-RZRP

To visit the Batten Disease Registry, click here