About

My Name is Marcy Freed. My son, Greyson has Friedreich’s Ataxia. Friedreich’s Ataxia (FA) is a life shortening and debilitating disease. You can read more about it here.

This blog is for all the parents like me who wake up every day with a broken heart but love fiercely anyway. It is also for the people who love us and who maybe, just maybe, have the guts to sit with the complexity and pain of our situation. This blog is for mothers, fathers, caretakers and generally, for people who love someone.  It is for anyone who finds themselves trying to navigate the corner of joy and grief.

The perspective of this blog is mine. Not my son’s. My experience as his parent and caretaker should never be understood as his experience as an individual navigating this world with a rare disease.