A Love Story That Changed Everything

On February 14, 2020 – Valentine’s Day – Victoria was born. She was our perfect gift, a burst of joy for our family. But as the months passed, the typical milestones we expected to celebrate began to slip away. While other children were beginning to babble and crawl, Victoria faced a world that seemed out of reach.

After a long journey of specialists and uncertainty, we finally received a name for the challenge Victoria was facing: OGT-XLID.

Life with an Ultra-Rare Diagnosis

OGT-XLID is more than just a medical label; it is an ultra-rare genetic condition that affects nearly every aspect of Victoria’s development. For her, things that come naturally to others – speaking, walking, and connecting with the world – are hard-won victories.

As parents, hearing that your child has a “rare” disease is a lonely experience. We realized that because so few children share this diagnosis, the path to a treatment wasn’t being built by others. If Victoria was going to have a future where her potential wasn’t locked away, we had to build that path ourselves.

We founded CureOGT not just for Victoria, but for every family told that their child’s condition is “too rare” to fix. We refuse to accept that.

Today, Victoria is a bright, resilient little girl who teaches us daily about strength. Her smile is the fuel behind our collaboration with world-class researchers at labs like the University of Georgia. We aren’t just hoping for a miracle; we are funding the science to create one. From gene therapy to drug repurposing, we are in a race against time to develop treatments that can change the trajectory of Victoria’s life.

Be Part of Victoria’s Breakthrough

Victoria is fighting every day. We are fighting every day. But we cannot do it alone. Your support of Victoria’s campaign directly funds the critical research that could lead to the first-ever treatment for OGT-XLID. When you donate, you aren’t just giving to a non-profit; you are investing in a little girl’s ability to speak, to learn, and to grow.

Help us write the next chapter of Victoria’s story. Together, we can find a cure.