Hirschsprungs Disease Awareness

Hirschsprungs- the Secret disease

My son was born October 20th 2008 with a very rare intestinal disease called Hirschsprungs Disease. This disease is the lack of ganglion cells (nerves that allow the bowel to relax so that stool can pass) in the bowel. There is a variety of severity, and my son suffers from Total Colonic, meaning that his entire colon is affected as well as half of his small intestine.
This disease means that my son was unable to have a bowel movement with in the first 2 hours of life. Not passing a bowel movement set off symptoms; vomiting, tiredess, swollen tummy, and poor feeding. X-rays confirmed he had a blockage and he was sent in for surgery. My son was diagnosed after x-rays, surgery, and a rectal biopsy.
My son spent 71 days in the NICU at Sacred Heart Medical Center at Riverbend, where he got a gastrostomy feeding tube for drip feeds, an ileostomy- a hole is cut in the tummy and his intestine is surgically placed in the hole, so he can pass stool into a bag attached to the tummy. He lives with these attachments every day.
This disease is so unknown. It is thought to be genetic. In a number of cases, it is hereditary, but most commonly, there is no family history. in the USA, 1 in every 5000 children have Hirschsprungs, 1 girl to every 4 boys.
My son having this rare disease makes me hope for a cure. I will settle for awareness, but lets face it, what happens when we talk about the toilet and bowel movements? People laugh, look disgusted, or pretend not to listen. Please help me to spread awareness of this secret disease and do a story!

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mamaj1969 says ... on Friday, Feb 4 at 9:05 AM

I completely understand, although my son has Ulcerative Colitis and had to have a colectomy done 2 and half years ago and has an illeostomy. We are also hoping for a cure. My thoughts and prayers are with you and your son.

pattyanna says ... on Thursday, Feb 3 at 12:09 AM

I feel your pain. Im so sad for your baby. God bless your familt.

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