Veronica, Thea’s Mom, has started a blog sharing her and her family’s TANGO2 journey – click here to go to Notes from a Rare Disease Mom

From Veronica:

“In 2017, my then 2 year old daughter was diagnosed with a rare disease called Tango2 disease. Since then, we have been searching for answers and treatments. We have learned so much about treasuring each moment with our daughter and have met so many other rare disease families that have touched our hearts. This blog is for all of those strangers and friends who have held out their hands and helped me along the way”

Click here to go to Notes from a Rare Disease Mom