Families of children with rare disease, especially undiagnosed illnesses, often wait years for answers. For Nicole Donoghue, a mom in North Carolina, the task of coordinating diagnostic efforts among the 10 specialists serving her young son ultimately fell in her lap. This meant the burden of piecing it all together fell to her. In her own words:
What I really needed was a medical quarterback helping me navigate all the results, the assumptions, and our options. But my son did not have a medical quarterback; he had a tenacious mom unwilling to let her son’s ailments go unanswered. But we ran out of time.