Hirschsprungs Disease Awareness Wristbands/Raise HD Start Price USD 5.00 Current Price USD 5.00 Time Left - Bid Count 0 Buy It Now Price - Reserve Price - Start Time Monday, December 01, 2008 End Time Monday, December 08, 2008 Location Aston, Pennsylvania See more about 'Hirschsprungs Disease Awareness Wristbands/Raise HD' Description Help to Raise Hirschprungs Awareness Hello, HD Awareness needs to be heard. Parents, young potential parents and grandparents need to be informed of this very rare and traumatizing disease. When I say traumatizing, I mean if HD is not known or your not aware and doctors never have been educated, it can and will be traumatizing when it does happen to your children or someone you know’s children. But, it doesn’t have to be. I am here to help raise awareness, share important information, and let it be heard. I will shout it from rooftops if I have to. By the end of this presentation you will know what HD is, and what to look for and share with others your expertise of HD. HD is a disease of the large intestine, mostly in newborns. It can be miss diagnosed, which is very often. And signs may not appear until young childhood. When a newborn develops, the intestines form nerve cells which help fecal matter move through the intestine and out of the body. With a child with HD the nerve cells stop at a certain point, and do not continue to the rectum. Mostly the large intestine is affected, but a small percentage like Trey, it can affect more then the large intestine. His affected all of the Large intestine and 6in of the small intestine. His case was 1 in a million. And is called TCHD or LSHD. These cells are called ganglion cells. A simple biopsy, can detect if the nerve cells are missing or not present in the bowel. But a lot of times this is the last procedure a doctor will perform when a child is diagnosed with HD. Mostly because of in-experience, and the rarity of the disease. But as you can see it is not so rare. 1 out of every 5,000 children will be diagnosed with HD. That is not a year this is worldwide, every 1 of 5,000 live births will have HD. How many of you have heard of it before Trey? No one, including myself. Doesn’t that scare you? How many know of leukemia, crones disease, or breast cancer. Why is HD not heard. The chances are much higher than these other 3. Why is research not being done, not enough funding, Aig sent their people to the spa for a day. On government funding. Research is being conducted in foreign countries, because of funding. I bet even the President hasn’t heard of HD. Here is my personal story of what happened when I found out Trey had HD.      My son was diagnosed 7yrs ago with a rare disease. After the birth of my son. He wouldn't eat or stool. No one knew what was going on but the doctors knew it was serious. I was frantic, the day I was supposed to take my son home from the hospital, the hospital had other plans. They shipped my 2 day old son from one hospital to another by ambulance. My son was put on IV support, and tests were drawn for Cystic Fibrosis. The test results would take 2 weeks for the final result. It was a waiting game.  In the meantime my son still wouldn't eat or stool. Something was seriously wrong? He was a normal birth of average weight. He looked healthy, what was wrong with my son? No one had an answer. The doctors finally gave him an enema, and about a few hours later his first stool, I was there to change his first and only poopy diaper, I cried.... Time was getting close for the results, but not fast enough, my son was showing signs of distress. I was at the hospital everyday, I wouldn't even take off my hospital band from when I gave birth. I would not take it off till he was home safe and healthy. I wouldn't even eat ice-cream, I thought ice-cream is a celebration food and I had nothing to celebrate, not when my son is in the hospital awaiting results.      I had two close friends that also were pregnant the same time I was, they gave birthto their babies and were able to take them home. Why can't I take my son home? What is wrong with my son?Then I tried to find my sons diagnosis on my own, I can't wait for the results anymore. I started looking through medical references. Then I was thinking back to his birth andhis signs and symtoms, my mother told me something strange that she'd forgot to mention at the time of his birth. She was in the birthing room with me, and when he was delivered she noticed green mucous over his head and face. She thought to herself that's not normal?What was it? He also was vomiting green bile right before we thought we were to be discharged. I was getting my son ready to go home, dressed the baby and was ready to be discharged,when my mother spoke up to the doctor, that he hadn't messed or eaten in the past two days. I wanted my mother to shush it, there is nothing wrong with my son, I though to myself. But the Doctor looked puzzled, and that's when they took my 2 day old son and transported him to another hospital. I just wanted to take my baby home. There can't be anything wrong, I thought he looks fine to me. Almost two weeks later, still no results. I was doing laundry at home when I received the phone call from the doctor, to get to the hospital right away, my son was going tosurgery and I had to sign papers? I was frantic what was the result?  I got to the hospital, the test for cystic fibrosis still wasn't back, but they had donex-rays on his stomach and found severe distension, and if they didn't relieve thepressure he could die? But, what is wrong with my son, still no one had an answer? I paced the hallway waiting with friends and family, waiting for results, waiting for an answer. Worried about the surgery. Finally, I was in the NICU waiting room just fell asleep when the doctor came him and tapped me on the shoulder. It's Hirschsprungs Disease. What was that? He was born with a rare disease, that only 1 in 5,000 babies are born with, but his was the worst the doctors have ever seen, his case was 1 in a million. The disease attacked all of the large intestine and 6 inches of the small intestine. He now has an ileostomy, to relieve himself.Everyone looked at me, even myself. What did I do to cause this? I painted my fingernails,I worked as a cashier, I ate some fast food. What did I do to my baby. But, the doctor rest assured me I did nothing wrong, It is just one of those rare diseases, that they themselvesdoesn't know what causes it, or cures it? It has been 7yrs and 8 surgeries later, that my son is somewhat normal after all of this.He still wears an ostomy bag. He has had many illnesses with the roto virus, an unsuccessful pull-though and a revisal of the ileostomy. I'm still waiting for the cure and to get the word out about Hirschsprungs awareness, no one should go through what I did. People should be aware of this disease, the odds aren't that great. Thank you for your time and letting me share our story,Corin ParkerMother of Trey, with TCHD Side one of the bracelet reads (Hirschsprung's Disease) Side two reads (Support HD Awareness) written in jokerman writing. Burgandy in color. Proceeds will be going to IFFGD Fund., (International Foundation Functional Gastrointestinal Disorders)! , And publication of a book for Treys Story.   Again, Thank you for your time   Place a Bid!