“Mommy, the baby isn’t moving.” Words no parenting class can prepare you for. As I rushed to my son’s aid, I would find him face down, unresponsive behind the couch. His skin cold to the touch, his eyes glazed over, drool dripping from his mouth. Alive, but my little boy was not there, he was not the same as he was just hours before…
This story by moms Mandy Seiders and Devon Fults comes at a time of unimaginable tragic flooding in Texas. As we read about AE patients Henry and Hadley, who were treated at Texas Children’s Hospital, please keep them, their families, the hospital, medical professionals, and all residents of Texas affected by flooding in your thoughts and prayers.
“When you hear hoofbeats, think of horses, not zebras.” This is a saying first coined in the 1940s by a physician who was teaching medical students not to think first of rare diseases, but to consider more commonly encountered medical diagnoses initially. However, here at AEA we offer support to those who have awakened one day to discover that they, or their loved one is a “zebra,” that is, a person with a rare disease. This can be a frightening experience as they struggle to grapple with a rare illness like AE that often appears quickly over the course of only hours or days. Next comes emergency visits to the hospital, teams of doctors, medical tests and finally diagnosis, which inevitably leads to infusions, surgeries, medications of many kinds and sometimes extensive rehabilitation. The shock can be overwhelming. To read an amazing story of two soon-to-become best friend “zebras,” Henry and Hadley, born only a week apart, diagnosed at age 3 only a month apart in the same hospital, Texas Children’s, by an amazing doctor, please click here: http://www.texaschildrens.org/blog/finding-herd.
We are thankful for the Seiders and Fults family for sharing their experiences.