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Stem Cell News and Research

Roanoke Teen to Head to Chicago in Pursuit of Crohn's Disease Cure

Roanoke Times
July 17, 2003

An insurance company, hospital and federal regulators have approved a Roanoke youngster with a severe intestinal disease to have an experimental stem-cell transplant that could cure or kill him.

Thirteen-year-old Jordan Fifer heads to Children's Memorial Hospital in Chicago later this month.

People ask him if he is scared or afraid of dying. He tells them he's not.

"I don't know why I am not scared. I'm just not," he said. "I'm incredibly eager. And I just know when I come back, I will be able to do things that I haven't been able to do for so long and that means a lot to me."

Like eat a piece of pizza and have the energy to play soccer.

Jordan, who this fall will be a freshman at Patrick Henry High School and the Roanoke Valley Governor's School for Science and Technology, was stricken with Crohn's disease at about age 10. With Crohn's, the digestive system comes under attack by the immune system. When the disease is active, it causes stomach aches, diarrhea, rectal bleeding, weight loss, fatigue and fever.

About a million Americans have Crohn's or a similar condition, ulcerative colitis, according to the Crohn's and Colitis Foundation of America. There is no known cure.

Jordan had tried without success to get relief through a variety of prescription drugs and other traditional therapies. His mother, Hope Trachtenberg-Fifer, learned about a Chicago medical team that has treated about a dozen Crohn's patients, adults and children, with a transplant of blood stem cells.

Jordan's health insurer - he's insured through his dad Gary's health plan - this week approved paying part of the cost for Jordan to have a transplant. He will be the youngest person treated so far.

Blood stem cells are the building blocks of blood inside the bones. Already, blood stem cell transplants correct disorders of the blood and disease-fighting immune system and repair damage to such systems caused by some cancer treatments, such as chemotherapy.

But until the transplant has been proved to address Crohn's, it is classified by the federal government as an experimental treatment. The U.S. Food and Drug Administration supports the ongoing experiment in which Jordan will participate and has approved methods to be used.

So within weeks, Jordan will leave for a three- to four-month stay in the Chicago area. He will be hospitalized only part of that time but must remain near the hospital for follow-up care. His mother will stay with him at a home for transplant patients and their families, from which Jordan and his Mom may move to an apartment.

Here's how the procedure works: Medication will draw stem cells from Jordan's bone marrow into his bloodstream for collection (he'll be his own stem-cell donor). High-dose chemotherapy will destroy his immune system. Then doctors will reintroduce the stem cells to his bloodstream. If all goes well, the cells will create a new immune system without the malfunction that afflicts Jordan today.

The procedure carries a small risk of death. Jordan's immune system may not regenerate, placing his body at serious risk of infection. He also could have an allergic reaction.

The Crohn's and Colitis Foundation of America, dedicated to education, patient support and fund raising for research, sounded a note of caution. The organization released a statement in which a member of its scientific advisory panel, Dr. William Sandborn of the Mayo Clinic, said he's uncertain the benefits of stem-cell transplants in Crohn's disease patients outweigh the risks.

Jordan's mother said all of about a dozen people who have had the procedure have been helped. The average Crohn's patient does not experience severe symptoms and does not need a transplant, she said. However, Jordan's Crohn's, because it is uncontrolled, actually poses a much higher risk of death than the procedure, she said.

Jordan has been hospitalized numerous times. He takes 33 pills a day. He suffers from bouts of digestive system bleeding that sometimes make it necessary for him to have a blood transfusion. His disease has stunted his growth and kept him from school and social activities. Yet, the youngster is getting good grades, played xylophone in his middle-school band and volunteers.

"Patients like Jordan, like my child, who have volunteered for this study are very desperate patients who are looking for light at the end of the tunnel and, it seems, have found it," Trachtenberg- Fifer said.

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