“Ollie’s Purpose” continues to gain a following for awareness on social media, television, radio and coverage of their family story.
More can be found about the family at bdsrafoundation.org and searching for “Ollie’s Purpose.”
Oliver has been diagnosed with CLN2 Batten Disease, which is a rare genetic disorder that affects around 1/100,000, and can be tested for during pregnancy.
Terry Thoene mentioned that part of their work was to get that testing approved as a regular part of pregnancy testing, and that as of July 29 – they believe it to be added to the list of regular tests being done.
The earlier the diagnosis can be made, the more preparation and help can be given to those effected.
From their support page:
“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.”