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Olivia Grace

    Home Staff Olivia Grace

    Olivia Grace

    Pennsylvania, USA
    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.

    Recent Posts

    • TANGO2 Research Project Update & Podcast

      January 21, 2021 | Uncategorized

    • Teaming up with Solace Nutrition to help increase the quality of life for those with TANGO2 Disease

      December 1, 2020 | Uncategorized

    • Meet Agathe De Miniac, Author of ‘Tango2’

      November 11, 2020 | Uncategorized

    • RARE DISEASE CONNECTION TANGO2 PODCAST: Everything to know about TANGO2, from the experts

      October 7, 2020 | Uncategorized

    • FRIENDS & FAMILY RALLY FOR RYAN

      September 21, 2020 | Uncategorized

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    • About TANGO2
      • Symptoms
      • Early Signs of TANGO2
    • For Families
      • New Diagnosis
      • TANGO2 Study Now Underway
      • Our Stories
      • TANGO2 Conference – Houston 2019
      • Family Resources
      • Sammy’s Angels
      • Submit Your Story
    • Get Involved
      • Volunteer
      • Ways to Give
      • Fundraising Ideas
      • Apply For Grants (Researchers)
    • Research
    • About Us
      • Our Mission & History
      • Our Leadership
      • Scientific Advisory Board
      • Blog
      • Committees – CALL FOR VOLUNTEERS
      • Press Kit
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