Oliver Isaiah Thoene was born on June 6th, 2018. Oliver could throw a baseball before he could walk. He learned to walk shortly after he turned one. He could run like the wind at two, and he could hit a baseball thrown to him before his third birthday. On November 22nd, 2021, Oliver was diagnosed with CLN2 Batten Disease. Since then, Oliver still loves baseball but has since forgotten how to hit a baseball. He needs help up and down stairs, has lost three-fourths of his vocabulary, and requires a paraprofessional in school. Oliver is still a funny, joyful little boy who teaches everyone he meets about the true meaning of bravery, perseverance, helping others, and loving Jesus Christ. This, we believe, is Ollie’s Purpose.

Our journey to parenthood was filled with years of infertility struggles and medical interventions before we were blessed with Oliver. Our joy was immeasurable until, at the age of three, Oliver began experiencing unexpected seizures. Medical testing revealed a devastating diagnosis—CLN2 Batten Disease. We turned to medical advancements, including Brineura treatments, which help slow the disease’s progression. While not a cure, these treatments grant us the most valuable gift—more time with our Ollie.





Our family has felt called to advocate for research and raising awareness through organizations like the Batten Disease Support and Research Association (BDSRA). “Ollie’s Purpose” aims to generate funding for BDSRA for critical research, advocacy and support, offering hope to families battling this relentless disease.

Raising awareness is key to helping the Batten Community. We believe that the more people who know about this disease, the better chance we have of someone finding a cure. This disease’s main victim is children. When people hear about this, they want to help. They care. When people care, that gives us hope.

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In the Media
Pediatric Neurology: Oliver's Story - Boys Town National Research Hospital


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