Sunday, September 07, 2003
Copyright © Las Vegas Review-Journal

Experimental Transplant

Teen who lost 50 pounds hopes stem cell operation combats Crohn's disease

Photos by Craig L. Moran. Bryan Guercioni, 16, sits in his room after school Wednesday. Because of Crohn's disease, he must limit his physical activities. Bryan Guercioni and sister Nicole play video games at home after school. Bryan has Crohn's disease and cannot properly digest food. As a result, he has stopped growing. Bryan Guercioni and his father, Ron, talk about Bryan's debilitating disease. Bryan recently was approved to undergo an experimental procedure in Chicago to fight his chronic Crohn's disease.

Las Vegas teenager Bryan Guercioni can't eat enough food to make him grow. The lack of nutrition also leaves him weary, with no strength to shoot hoops or make it through an airport without a wheelchair.

The 16-year-old Las Vegas High School student suffers from severe, chronic Crohn's disease. Portions of his small intestine, usually half an inch in diameter, are so diseased they are only as wide as a stick of pencil lead, making it next to impossible to properly digest and process food.

Bryan's disease is so severe he has recently been approved to receive a rare experimental stem cell transplant at Northwestern Memorial Hospital in Chicago. The teen would be the 11th person in the country to receive the transplant to help combat Crohn's disease, an inflammatory bowel disease caused by a dysfunctional immune system.

People with the disease have an immune system that mistakes food and normal body tissue for foreign objects and, as a result, attacks the gastrointestinal tract. The disorder can cause anything from bloody diarrhea 30 times a day to vomiting, severe stomach pain, high fevers and extreme fatigue. Some people have mild forms of the disease and occasionally experience flare-ups; others, such as Bryan, are chronically impaired. The disorder can be fatal.

The disease often leads to malnutrition and can hinder the physical and mental growth and development of children. There is no cure. Treatment consists of surgery to remove infected portions of the bowel and numerous drugs to combat pain, diarrhea and inflammation.

The precise cause of Crohn's disease remains a mystery, but many researchers believe it's a reaction to a virus or some other organism in the environment. They also speculate that genetics predisposes a person to the disease.

More than 500,000 Americans suffer from the disease. Most patients are between the ages of 15 and 35, but the disorder can strike at any age, according to the Crohn's and Colitis Foundation of America Web site.

"I still have a chance to hit my next growth spurt if I can go into remission," said the 5-foot-8-inch, 100-pound teenager. "I want to fly helicopters in the Army someday."

Bryan was diagnosed with Crohn's disease nearly a year ago, after he had lost 50 pounds and had constant stomach pain and cramping. Since then, he has been in the hospital three times and has missed 49 days of school.

He only consumes Ensure liquid supplements and rice cereal, along with dozens of daily pills to combat pain, infection and his dysfunctional immune system.

"Eating used to be my hobby, but not anymore," Bryan said. "I'm mostly housebound now. I don't have the liberty to eat what I want or to even ride a bike or play basketball, because activity aggravates my stomach."

Bryan also suffers from sudden, high fevers that reach 105 degrees and the sudden onset of hypothermia, where his body temperature drops to 92 degrees.

"My daughter found him once, lying in his bile, freezing and shaking," said Bryan's father, Ron.

Bryan lives with his father and his 14-year-old sister, Nicole. The family hopes the stem cell transplant will control the disease and put Bryan into remission.

All 10 patients who have received the transplant no longer suffer from any symptoms related to the disease, said Dr. Richard Burt, a stem cell transplant specialist and chief of the division of immunotherapy at Northwestern. The patients still have some traces of Crohn's disease in the body, but they can eat normally, function normally and no longer have major bowel problems.

"We offer the stem cell transplant to those who have very serious disease and have failed everything else," Burt said. "The 10 we have done are all doing great and are in clinical remission."

The stem cell transplant procedure is still considered experimental, but it was approved by the Food and Drug Administration for clinical trials two years ago.

Bryan was scheduled to receive the transplant Sept. 15, but his father, a local police officer, has yet to come up with the $100,000 needed for the transplant, living expenses in Chicago and follow-up medical care. Insurance won't cover the medical costs, because the transplant is considered experimental.

Ron Guercioni said surgery is an option to remove the diseased portion of his son's bowel, but that the disorder will resurface. The boy will have to continue having surgery until he no longer has any bowels left.

"The stem cell transplant will save his life," said the father, who is taking out a second mortgage on his home to help pay for the procedure. "He can grow up to be a man and lead a normal life. I can't even wrestle with my boy right now."

During a stem cell transplant, doctors harvest the patient's own stem cells and then deliberately destroy the immune system with chemotherapy. After the immune system is destroyed, the stem cells are transplanted back in the body in the hopes that they will form a new, healthy immune system.

Stem cells form all the immune cells in the body, Burt said.

"Your immune system cells sometimes live for decades in the body, so if things go wrong, they can cause problems for a long time," Burt said. "We destroy them and start over with new cells. We try to reboot the immune system."

The Guercionis say they hope to have enough money to pay for the procedure sometime this year.

"It's been very hard," said his sister, Nicole. "Bryan is my best friend, and I haven't seen pure joy in him in a very long time. The best thing about this transplant is that I'd get to see him happy again."

The family has a bank account set up for anyone who wishes to donate to help cover Bryan's medical expenses. Donations can be made at Bank of America, account number 4964052080.