The Carter Family have this grounding to them that inspires the belief that even in the face of adversity and challenge, you can pivot and work with whatever is happening. Faced with extraordinarily challenging circumstances a few years ago when TBCK Warrior, Amari had a tracheostomy and g-tube placed, her mom Alyssa shares there’s difficulty found even years later to talk about it. She says only now has time granted her the perspective to be thankful that they made that decision, but real-time medical decision-making isn’t easy. The Carter Family have been compassionate and active members of our TBCK community, their advice to diagnosed families is to never compare your kids with someone else’s, just let your kid be who they are. Her helpful advice to the community is to utilize the TBCK Parent Support Group on Facebook as a tool, sharing that she has been in doctor’s appointments and searched the past history of the group to get insights on seizure medications, medical experiences, and other important insights from other TBCK families. She gives even more evidence to the importance of community sharing, putting perfectly, “We can’t go on Google and do our research.” It’s families like The Carter Family that inspire our work at The TBCK Foundation and help us to support our patient-led research network. (Amari is 4 years old and lives with her family in Texas, USA)