5 KM Hope for Haylie Walk

Our daugther Haylie Chute was born on May 2, 2018 in Winnipeg, MB. At seven days old, she was diagnosed with Hirschsprung's Disease. Haylie went on to have an ileostomy at the age of 2 months old. At 14 months old, she underwent a 9 hour surgery to remove her entire large intestine (colon) as well as the last 20 cm of her small intestine (ileum) and had a new ileostomy placed. After this surgery, Haylie developed an oral food aversion and she had to be IV and tube feed for almost two years. Haylie has had multiple hospital visits and admissions due to several complications related to the Hirschsprung's Disease. The most severe complication is enterocolitis and it can be fatal if not treated emergently. Haylie has had anywhere from 2-6 bouts of enterocolitis a year requiring hospital admissions. At the age of 2, Haylie underwent a Duhamel pull through surgery where they created a rectal pouch with her small intestine and connected it to her anus. Unfortunately, the surgery was not successful and Haylie continued to have ongoing issues with stooling. Haylie had 6 rounds of anal sphincter botox injections and 2 additional surgeries to remove rectal pouch spurs only to still have ongoing issues. In October of 2021, at the age of three, Haylie and her family travelled to Washington, DC to see world-leading pediatric general surgeon Dr. Marc Levitt. Dr. Levitt performed a redo Swenson pull through surgery to remove the Duhamel rectal pouch and create an ileoanal anastomosis (small intestine directly to anus connection). Unfortunately, this surgery was also unsuccessful and Haylie is still unable to pass stool or gas on her own. Haylie has gone on to have an additional 7 rounds of anal sphincter botox injections, pelvic floor physiotherapy, biofeedback therapy, in addition to multiple different trials of medications and other treatments, all of which have been ineffective. Her family and medical team have sought out experts from Toronto Sick Kids and Children's National Hospital in Washington, however, so far her status is unchanged. Haylie requires daily rectal irrigations from her family to prevent her from developing enterocolitis, a life-threatening bacterial infection.

The money we raise yearly by doing our 5 KM walk/run, we donate to REACH, a non profit organization committed to improving the lives of children and families affected by Hirschsprung's Disease by increasing awareness, promoting education, connecting families and supporting various research around the world.

We hope that one day, with all our families help together, we can help find a CURE for Hirschsprung's Disease. Thank you for helping us find a cure for our hero, Haylie bug.

This year's 5KM Hope for Haylie Walk is on Sunday, September 10, 2023.