Tuesday, March 11, 2003, Page A1

Teen hopes for healing in the blood

By JEFF STURGEON
THE ROANOKE TIMES

At an hour most kids his age are waking up, Jordan Fifer submitted yet again Monday morning to a needle to his chest.

His mother, Hope Trachtenberg-Fifer, a nurse, tapped into an implanted catheter to Jordan's heart. Jordan took the assembly she left dangling from his chest and used it to fill three vials with his blood. Then Jordan went back to being a typical 13-year-old boy. He caught the bus to James Madison Middle School, where in his first-period class he plays xylophone in the school band.

The Roanoke youngster straddles two worlds: that of a typical teenager who enjoys music, people and computers; and that of a patient with a disease so serious doctors have ordered a weekly blood test.

Later this year, he hopes to get a clearer picture of which world will define his future. He could become the youngest person in the world to receive a stem cell transplant for Crohn's disease. The experimental procedure, if successful, could restart his growth and end a host of unpleasant symptoms.

His journey has included aromatherapy, acupuncture and a few other alternative therapies. "I feel I have tried all the therapies out there for Crohn's," said Jordan, who is eager for the transplant.

His illness, an incurable form of inflammatory bowel disease, has defied control since he was diagnosed at the age of 10. Dr. Peter Whitington of Children's Memorial Hospital in Chicago said the special transplant procedure performed only at the Chicago hospital is about all medicine has left to offer the youngster. Without it, Jordan could lose his colon to the disease.

So while his friends go on summer break, Jordan will be on restricted activity - either preparing for or recovering from the procedure - barring unexpected delays. The hospital and the U.S. Food and Drug Administration still must agree on details of the procedure, and the family must guarantee payment, before the transplant can take place.

Crohn's, which affects 600,000 adults and 100,000 children in the United States, is an autoimmune disorder, in which the immune system attacks the body's own tissues it has mistaken as foreign invaders. White blood cells infiltrate the intestinal lining, causing chronic inflammation. The cells, often triggered by food, produce noxious products that injure tissue and cause diarrhea, rectal bleeding, pain and fever. Malnutrition, weight loss, intestinal damage, anemia, joint pain and skin problems are risks. The cause is unknown.

Jordan's mom said she noticed changes in Jordan, such as more frequent bathroom use and thinness, when he was 10. Within six months of his diagnosis, inflammation was so severe doctors put him on a liquid diet to give his digestive system a rest. But he's been hospitalized 17 times and had nine blood transfusions. At 4-feet-7, he's several inches shorter than most of his peers.

The disease can flare up at any time, sidelining Jordan for from a few hours to a few weeks.

Despite missing two-thirds of a year of school because of his condition, Jordan said he's earning straight As and is on schedule to enter high school in the fall - a year early for his age. He started kindergarten when he was 4. The dark-haired youngster with oval glasses and a watch that doubles as a calculator is bright-eyed and energetic. He volunteers at the To the Rescue Museum at Tanglewood Mall. He has his own Web site (about his disease), and dabbles in photography.

"When I talk to him, he always seems perfectly normal . . . like any other kid," said Maggie McDowell, a friend since third grade. "At school, he's normal, funny, and griping about the same things we all are, even though most everyone knows he has bigger problems to deal with."

Doctors hope a cure for Crohn's lies in tapping the power of blood stem cells, which seed the production of blood inside the bones. Already, blood stem cell injections correct disorders of the blood and disease-fighting immune system and repair damage to such systems caused by some cancer treatments, like chemotherapy. They treat other autoimmune diseases, such as lupus and multiple sclerosis.

Doctors in 2001 gave the first stem cell transplant to an adult Crohn's sufferer.

Those same doctors want Jordan to join the federally approved clinical trial. One youth, who's 16, is participating. 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. "It's like rebooting a computer," Whitington said.

The procedure carries a small risk of death.

Adult transplant patients have benefitted greatly, Whitington said. "It's possible we're curing these patients."

On the Net:

Jordan's Web site: www.fifer.net/jordan

Crohn's and Colitis Foundation of America: www.CCFA.org

Hope and Gary Fifer are seeking donations to help cover their son Jordan's planned stem cell transplant, expected to cost about $75,000. They don't know what amount, if any, their health insurer will cover. In addition to the cost of the transplant, the family will need $25,000 for food, lodging and incidentals during an expected three-month stay in Chicago for Jordan and his mother. Donations may be sent to the Jordan Fifer Fund, Beth Israel Synagogue, 920 Franklin Road, Roanoke VA 24016.

CROHN'S DISEASE

What is it?

An autoimmune disease in which the immune system attacks the body's own tissues it has mistaken as foreign invaders. White blood cells infiltrate the intestinal lining, causing chronic inflammation. The cells produce noxious products that injure tissue and cause diarrhea, abdominal pain, rectal bleeding and fever. Patients may suffer from poor absorption of nutrients, weight loss, stunted growth and development, intestinal leakage, scarring and blockage of intestines, anemia, joint pain and skin problems. Some are at increased risk of cancer.

How many have it?

Crohn's disease and another inflammatory bowel disease, ulcerative colitis, affect about 1 million in the United States. Most Crohn's patients are diagnosed before age 30.

What causes it?

Unknown; genetic link being explored.

How is it treated?

Medication is used to control inflammation and relieve symptoms, while supplements help ensure good nutrition. Surgery is used to remove damaged intestinal segments. No cure exists, but a team of Chicago doctors have reset patients' immune systems using stem cell transplants.

Is it fatal?

It is not considered a lethal disease and many patients lead normal, productive lives. However, serious symptoms sometimes require hospitalization and a cessation of daily activities.

Sources: Crohn's and Colitis Foundation of America, National Library of Medicine

Photo Captions:
(Photos by Sam Dean, The Roanoke Times)

Photo 1: Every Monday morning before Jordan Fifer goes to school, his mother, Hope, draws three vials of blood from a permanently installed access line to his heart. Jordan suffers from Crohn's disease. COLOR

Photo 2: As Jordan Fifer (left) celebrates his 13th birthday with family, he is scheduled to become the youngest person to receive a stem cell transplant for Crohn's disease.

Photo 3: Jordan Fifer talks with his band teacher, Joanne Steele, after class at Madison Middle School in Roanoke. Jordan is active in as many activities as possible despite the sometimes debilitating effects of Crohn's disease. COLOR