In November 2010, Addison Avery came into the world and quickly our lives were turned upside down. It quickly became apparent she was ill - but it wasn't until she suffered a developmental regression after anesthesia, losing all her milestones, at 9 months old that we learned just how serious and life-altering it would be.
Unfortunately, we were just a couple weeks pregnant at that time - everyone had assured it it was not a genetic problem.
Audrina Skye was rushed unexpectedly out of the womb at just 30 weeks gestation weighing 3 lbs, 6 oz. We were optimistic in her first few weeks of life, but then she began to deteoriate. She showed similarities to Addison's symptoms. By the time she was 3 months old, we were certain we were dealing with two children suffering from the same disorder.
It has been 22 months of searching for a diagnosis and we've had to relocate to a different state for care, travel to 7 hospitals and tens of thousands of dollars spent out of pocket. We have been barely making ends meet while my husband works 2 jobs to keep us afloat. My days are filled with painful and difficult medical procedures, multiple appointments a week, and daily therapies to help them.
Audrina suffers from respiratory, kidney, heart, G.I., neuromuscular and autonomic problems. Addison has been diagnosed with Atypical Autism and has G.I, neuromuscular, circulatory and autonomic problems. Audrina is tube fed and neither of them are able to eat anything but a special formula. Audrina is on multiple monitors, oxygen, and heart medications to keep her stable, and Addison endures frequent painful bowel regimens.