ALBANY, N.Y. (NEWS10) — A local toddler facing an ultra-rare diagnosis is continuing to push forward through significant challenges and hospitalizations. She’s just 2-years-old, and NEWS10 first introduced her to you back in September. Halo is facing a genetic disorder that less than 200 people in the world are known to have.
It’s called CTBP1, and it affects everything from muscle tone, to movement and balance issues, delayed milestones, and intellectual development. Halo has spent the last several months in the hospital and the past three weeks fighting through respiratory infections and pneumonia. Tuesday, she coded when her heart rate and oxygen suddenly dropped. Yet, through all of this, is a single string of hope—a little girl, and a determined mother, who will never stop fighting.
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“There’s no road map to navigating this kind of life, and I’m just doing everything I can to give Halo the best quality of life, to be the best advocate for her,” stated Halo’s mom, Theresa Little.
Halo’s diagnosis currently has no cure. It’s so rare, geneticist Carlos Mares says research is struggling…