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.
A very big thank you to Chad and Taylor for sharing their daughter, Talynn’s, story of her journey through her first year of life, and her diagnosis of Bohring-Opitz Syndrome. You can read more about Talynn’s journey at her blog, Open Eyes, or follow them on facebook or twitter. – Ann Z Talynn Gurganus was born on … Continue reading Your stories: Talynn’s story