June 9, 2024

Together, We Are Batten Advocates for a Cure. 

Never in my wildest dreams did I imagine our family would hold the title of "rare disease family". Or that both our boys would be impacted by CLN2, Batten Disease. Or that a world without treatment and a world with treatment would draw a before and after line right smack down between the three years between our boys. 

As most of you know, our son Titus was diagnosed with Batten Disease in April of 2015. He was nearly 5. When we found out this disease was genetic and all our kids had a 25% chance of being affected, we tested Ely, Titus's little brother, and found out he too had the disease. Ely was nearly 2 years old. Titus ran into the arms of Jesus at the age of 6 on Sept 17, 2016 and 10 days later, in a blur, we climbed on a plane to Columbus, Ohio carrying desperate grief and wild hope together to get Ely started on Brineura, an enzyme replacement therapy infused directly into the brain. 

Nearly 8 years later, Ely will be turning 11 this summer. We are grateful for the added years this treatment has given us. And while it is a GIFT, our son continues to decline as the disease progresses. This year has been a hard year for our batten community as we've watched several promising treatments fall off because of funding or lack of progress. But just days ago, yet another promising gene therapy is on the rise, hoping to bring a trial to our kids in late 2025. We must continue to spread awareness, raise funds, and support the BDSRA Foundation as together we advocate for a cure! The virtual 5k is one way we can stand together in this rare disease world! 

Thank you for being Titus and Ely's TEAM!