Olivia Grace

Olivia Grace is 14 months old and was diagnosed at about 4 weeks old. While in-utero, genetic testing was done to test for any potential abnormalities. Testing came back positive for DiGeorge Syndrome. Mentally our family prepared for a cleft palate and other DiGeorge characteristics. However, when Olivia was born she showed no signs of DiGeorge Syndrome. When we brought Olivia to a genetic doctor just to make sure, they did some further testing and she was negative for DiGeorge but positive for Tango2. We have been extremely blessed that so far she has been very healthy. At about 13 months of age she was acting out of sorts. When trying to sit, she fell right back with no upper muscle control and appeared to be very sleepy. In addition to these episodes of muscle weakness, she has dystonia and neck tilts. She has had an EEG to test for seizures and the results were normal. As we have learned the stories of other Tango2 children we know that it may not be a straight path. It’s going to be a winding road with a lot of hills but Olivia is going to be okay.