Thank you so much to Laura and Blake Moore of Tahoka TX for sharing their daughter Ellie’s story with Juanell Jones of the Lynn County News and helping raise awareness for TANGO2. This is a wonderful article that touches upon the experiences, challenges, uncertainties and hope of one family raising a child affected by TANGO2 disease.
“Christmas is about joy, and hope, and love. For one Tahoka family, this Christmas is all of that, plus a hope that their daughter will have a day relatively free of some of the serious symptoms of a mysterious disease that until 2016 didn’t even have a name. Eleanor Moore (‘Ellie’ for short) is 6 years old, and she has TANGO2.
Ellie is an adorable 6-year-old girl that in many ways lives like any other little girl – she loves her baby dolls, and both of her big broth- ers, and she knows that Mama and Daddy love her and care for her. But Ellie is one of only 48 people in the world to be diagnosed with a relatively unknown disease called TANGO2, a rare genetic disease that has changed her life, and the lives of her family, dramatically.”