May 2013

Back in 2009, just after the newly celebrated milestone of turning 10, my son Steven came home from school not feeling well. For the next 24 hours it seemed that Steven had a stomach virus. Within three days he was bleeding. Within three weeks he had lost 30 pounds, despite being under medical care. “We’re not sure he is going to make it,” are the very last words a parent wants to hear whispered solemnly in a hospital vestibule. Holding the little hand of my child while he was given Last Rites was the absolute unthinkable become reality. And our whole world changed.

When telling Steven’s story I cannot stress enough that he had never been sick one day with any stomach issues. He was a very healthy boy. Yet, this disease ravaged him in unbelievable ways. I am called by the dire quest for a cure to reveal graphically the effects of Crohn’s Disease and Steven’s course on its never–ending road. Literally never–ending, because the medications didn’t work for him, and there is no cure.

Crohn’s Disease is an auto–immune disease that causes inflammation and deterioration of the digestive tract from the mouth to the anus. It can affect the eyes, skin, bones, muscles, liver—the entire body—and my son deals with it all. Steven’s medical team worked tirelessly and tried everything they could to get him into remission. Nothing worked. As soon as he was stable enough, and after all else failed, they had to remove his entire colon, part of his small intestine and most of his rectum. At the age of 10, Steven had an ostomy bag on his side. He’ll probably have it for his lifetime unless we find a cure. At the time of this writing [2003] he is 13, and three years later, there’s still never a complaint. Stevie led the way through the trauma of this life challenge with faith and humor. Only a preteen boy could find a bright side in having no colon. Steven would say that when another kid would proclaim, “Ewwww, who cut the cheese?,” shining accusatory eyes on those nearby, he would proudly say that he was the only kid there who could not be suspect. “Hey, Kid with no colon here. Not possible. Ya need a colon for that.” He thought this hysterical.

A kid with no colon wears an ostomy bag on the outside of his body. His small intestine dumps his waste into that bag. A kid with no colon doesn’t always sleep through the night. He’s either woken up to empty his bag, or it fills with air and compromises the seal and that kid wakes up in a puddle of his own sludge. He’ll strip his bed and get into the shower in the middle of the night and clean up. He’ll change his wafer and bag, and sometimes catch a few more minutes of sleep before running off to school. That kid with no colon is my kid. No one at school will know that he’s been up since the middle of the night. And to him, it just is, and it’s not a factor that’s important to be known. He’s just glad to be there. Some days he has no energy and will need to go into school late, or just do schoolwork at home. At times I’ll notice him moving slowly or altering his gait in a particular way and ask how he’s feeling. He’ll respond “My legs are hurting, but I’m good,” a sincere smile accompanying his response. While in the hospital all he spoke about was wanting to get back on the baseball field, back to the playground and back to school. And he did. Six weeks post–surgery, Steven was back on the field and, after missing seven months of 5th grade, back in school. There was never a moment of self-pity of defeat. His positive nature helped all of us deal with his illness—family, friends, schoolmates. Three years later, and he continues to set the tone and lives the life of a regular kid. Very inspiring.

Last June I did my very first half-marathon. Three weeks later, I did my second. And in December, I did my third half marathon of 2012. In 2013, my goal is to participate in four half–marathons and raise $50,000 in celebration of turning 50. So, as I’ve done before and will continue to do until I can no more, I am asking for your support to sponsor me in these marathons and raise money for the Crohn’s and Colitis Foundation of America for research and to fund Camp Oasis, a sleep-away camp for kids with Crohn’s & Colitis. Most of these kids cannot go to “regular” camp. Steven says that Camp Oasis is, “the best five days all year. At camp, everybody understands what you go through. No one has to be worried or feel embarrassed about the way your body betrays you. It’s like meeting all these family members you’ve never met before. There’s an instant bond, and they just ‘get you’.”

Steven is a boy of deep faith. He is smart, funny, resilient and pragmatic beyond his years in dealing with his disease. He is an American history enthusiast and a huge baseball fan. Steven is the youngest of four children. He is our baby and we love him dearly. It’s hard to open up our lives to the world and ask people for money, but this is MY CHILD- I have to! Please know that any amount you can give to help me make a difference is so greatly appreciated.

Thank you so very much for taking the time to read Stevie’s story and learn about Crohn’s Disease. Awareness is the first step toward a cure.

With tremendous gratitude,
Theresa McQuillan DeCrescenzo