Every year, the TANGO2 community rallies together to participate in our virtual campaign, Shine a Light on TANGO2. I participate because I want to make a difference in the lives of children and young adults living with TANGO2 disease.  

TANGO2 Disease is a rare genetic disease discovered in 2016.  I’d like to share the story of my two grandsons, Hudson and Cole and their journey with Tango2.   

In October of 2020 my Grandson Hudson passed away suddenly and unexpectedly at 5 1/2 months old.    My Daughter Kaitlyn and her Husband Russell pursued genetic testing in hopes of finding any answers to his unexplained passing.   A year later, our family received the test results and it came back TANGO2 Disease.   

TANGO2 Disease is a genetic disease that affects children and young adults causing muscle weakness, muscle breakdown, developmental delays, seizures, metabolic crisis, and life threatening cardiac arrhythmias.  Metabolic crisis is life threatening and is usually precipitated by dehydration, fasting, or viral infection. Many TANGO2 patients have a long road to getting a correct diagnosis.  Early diagnosis is critical in managing their life threatening symptoms.   

Because TANGO2 has made an impact on our family, we are trying to spread awareness so that children can receive early and proper diagnosis.   

At the time of receiving Hudson’s TANGO2 diagnosis my daughter was already 1/2 way through her pregnancy with Cole.  Cole was tested in utero and discovered he had TANGO2 disease as well.   

Because of Hudson’s TANGO2 journey and the knowledge we have learned from Tango2 Research Foundation, Cole is currently 10 months old and walking! His parents work 24/7 making sure he is well hydrated and fed, monitoring his glucose levels, and checking for any signs to help prevent him from having a metabolic crisis.

Please join my family and I as we shine a light on TANGO2.  Please consider making a donation to the TANGO2 Research Foundation. 

The TANGO2 Research Foundation is a 501(c)(3) whose mission is to fund and coordinate scientific research to increase studies that will lead to managing life-threatening symptoms for those living with TANGO2 disease.