Tomorrow February 28th is a special day to me. It is Rare Disease Day. As a mom who almost lost a child to a rare disease this day touches a special place in my heart. Please help me in celebrating the day by wearing jeans tomorrow and by becoming Aware of something Rare then Share. Take a moment and visit www.rarediseasefoundation.org or www.rarediseaseday.org and learn something new. Please also take a moment to share something you have learned in the comments below or with others in your life. Show you care about someone rare by being aware!
Here is my Share:
This is my son Nathanial. He is six and one of the most loving children I have ever had the joy of knowing Nathanial was born with Hirschsprungs Disease. This means that he was born with no nerve endings in a portion of his large intestine, 2/3 of his large intestine to be exact and temporarily had an ileostomy to allow his body to heal from damage caused by this disease. Hirschsprungs can affect any where from just a few millimeters to the entire intestinal tract in the most severe cases. The affected area is unable to function causing the person to become constipated. If left untreated it can cause illness and even death. It is often diagnosed with in a few days after the child is born but sometimes goes undiagnosed or misdiagnosed due to being rare and not well known. It affects approximately 1 in 5000 people. It is treatable but is NOT curable.