Our 7-year-old daughter Thea loves to swim and play tennis. She is very artistic and loves to make her own doll house furniture out of paper. She takes a few minutes to warm up, but once she does she is very loving and sweet.
When Thea was 2 years old, we ended up in the hospital after not being able to wake her up one morning. She had been suffering from strange episodes of lethargy and stopped meeting milestones at 18 months old. Finally, after an 11 day hospitalization and a full genome sequencing test, Thea was diagnosed with TANGO2 disease. We learned that the disease was newly discovered, just three months prior to her hospitalization. The doctors did not have much to share about the disease and we had no idea what to do next.
We began to reach out via social media to try to find other families with this diagnosis. Gradually, families around the world began to find us on Facebook and we started to learn from each other. We learned what helped our kids, what made them worse, how to talk to doctors, and eventually how to start a research foundation. 100 families later, we are gaining momentum with the TANGO2 Research Foundation and five promising research projects underway.
Because of this disease, Thea is at risk for mental and physical decline and even premature death. Our greatest fear is that someday Thea won't be Thea anymore. The support of our family and friends gives us hope for a better future for Thea and kids from around that world that have become part of our TANGO2 family.