I am excited to announce The Mighty Magazine chose to publish my blog "The Importance of Organization When Your Child Has a Rare Disease"!
Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating life. For my child, we have a primary care doctor, twelve specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be very difficult which is why organization is extremely important. Here are some of the ways I have learned to manage Talynn's care.