As most you know, Zachary was diagnosed with Crohn's disease before his second birthday. It was a very rough road the first six years of his life. He underwent many painful and invasive procedures. He was not able to be a regular kids like other toddlers and pre-schoolers as you can imagine.
He is now almost 18, and I have worked tirelessly with The Children's Hospital of Philadelphia and the IBD Family Research Council to find a cure for this horrible disease. I promised him a long time ago that we would not sit around and wait for a cure…we would be a part of making a cure happen. I plan on keeping my promise to him until a cure is found.
Zach said to me a few years back, "Mommy, I'm glad that I have Crohn's disease," with surprise, I asked him why. His response was, "How many kids can say that they were a part of finding a cure for their disease. I think I'm really lucky." Early on, we didn't feel so lucky when he had to undergo extremely painful and invasive procedures. For three years from the time he was three, he needed IV infusions every five weeks to keep this disease under control...that didn't work. He had to have a spinal tap to relieve pressure from his brain at three years old due to medication he was taking. He has had so many colonoscopies I've lost count. The current therapies cause cancer, wreak havoc on the immune system among many other things. His most recent treatment was nasogastric tube feeds in which he inserted a feeding tube into his nose each night and fed for 10 hours. He had been doing this for nine years and asked at least once a week, "How much longer do I have to have a tube?" This treatment has put him in remission...but for how long!
Our children depend on the current therapies available…I should say, their LIFE depends on it! We need better safer treatments for our kids and that is not possible without research. Research depends on funding which is why we hope that you will be a part of this amazing day full of food, family and fun. My only hope as a mother is that Zach lives a long, healthy and happy life doing what he loves to do...pain free and disease free! I hope that he can not only have a dream, but plan to follow that dream to become whatever he wants to be. I hope you will join our family in fighting the fight to cure Inflammatory Bowel Disease!!