Being a mom is simply put, the best job ever!
My name is Tory Hueston, mother of two, but specifically, one of the most amazing children you will ever meet- AVERY! Avery was born a seemingly healthy 8lb 12 oz little boy, but within days, his health began to seriously deteriorate. On day 10 of Avery’s life, we found ourselves rushing him to the ER after vomiting bile. He was immediately taken for an upper GI to ensure that his upper bowel was not twisted. Avery was diagnosed with Hirschsprung’s Disease at 14 days old. At 20 days old, Avery underwent an eight-hour surgery to do a series of biopsies to find out how much of his colon was actually affected. At this time, he was diagnosed with something called total colonic Hirschsprung’s disease. His entire colon and 7cm of his ileum were aganglionic (without ganglion cells). At 22 days old, Avery underwent another 5-hour surgery to give him an ileostomy. We were in the PICU for nine long, exhausting, emotional days. I can tell you right now, there is no mother in this world that envisions her child with a bag of poop hanging off his belly! We all hope and pray for a healthy child, but ostomy bags?
After all this I knew I had to do something to help. I started organizing a Golf Tournament HD fundraiser for REACH called The Avery Kent Classic to raise awareness for Hirschsprung Disease. The "Kent" part of the name is dedicated to my brother who died from HD, and in honor of him, it's also Avery's middle name! I love my son so much and want every family who has been touched by HD to thrive. It is possible, manageable, and if we work together to raise awareness by fundraising, talking and sharing, we can make a difference.
Happy Mother's Day everyone! Give your kids a big hug today!
Warmest,
Tory, HD Mom
