Boy, 8, battles rare nerve disease
BY KAREN BERKOWITZ
Gary Hultman didn't think life could get much worse before another medical
bombshell in late November proved him wrong.
For six years, Hultman had watched his wife, Florence, deteriorate from a deadly form of neuropsychiatric lupus. The couple
had struggled as best they could to help their 8-year-old son, Aaron, cope.
Then, the day before Thanksgiving, the Hultmans' seemingly healthy son had a seizure at school.
A magnetic resonance imaging scan led doctors to quickly conclude that Aaron suffered from adrenoleukodystrophy (ALD),
a rare disease that causes the myelin, or insulation around the nerves, to break down over time.
The doctors put Aaron on anti-seizure medications and sent blood samples to the Kennedy Krieger Institute in Baltimore,
Md., which confirmed that Aaron had ALD, a disease that affects one out of every 17,900 boys.
"Basically, it was a death sentence," Hultman said, describing the pall of darkness that came over his family with the
"I knew Aaron's mom was in trouble and that Aaron and I were living with some one who is getting sicker and sicker as time
goes on," said Hultman, a resident of Chicago's Norwood Park neighborhood and display advertising representative for Pioneer
Press. "When I found out (Aaron) was sick, it was just the worst thing."
But 10 days later, the family received a call from a pediatrician that provided a glimmer of hope. The family learned that
physicians at Fairview Children's Hospital, affiliated with the University of Minnesota, were introducing disease-free stem
cells into young patients with ALD, and they were willing to evaluate Aaron.
According to the Stop ALD Foundation, the introduction of healthy stem cells into an ALD patient can halt and in some cases
reverse the progression of the disease.
The stem cells are harvested from bone marrow or the blood contained within an infant's umbilical cord.
In late December, the family traveled to Minneapolis for a preliminary evaluation and tests.
They were back home in Norwood Park only a few weeks when they learned Fairview had found three suitable matches from umbilical
"It takes longer to find a match with bone marrow and the physicians did not think Aaron had that kind of time," Hultman
said. Tests since his diagnosis already have shown he is having problems with memory and organizational skills.
On Jan. 10, the Hultmans returned to Minneapolis to begin a three-week regimen in preparation for the introduction of healthy
cells into Aaron's body on Jan. 31.
In preparation for the blood transplant, Aaron must undergo chemotherapy to suppress his autoimmune response system so
that his old cells don't reject the newcomers.
But the day before Aaron was to have a Hickman catheter placed into his chest on Jan. 21, the family received a call from
the bone marrow transplant coordinator saying the procedure had been placed on hold because of questions raised by the secondary
insurance carrier that provides catastrophic coverage. The carrier had classified the procedure as experimental.
"I don't (care) what you call it," Hultman said, expressing anger and frustration at the decision. "It is the only thing
that is going to save Aaron's life. Without it, his chances of falling victim to this disease are pretty good."
Florence Hultman had received assurances the procedure would be covered during conversations with a case manager for Definity,
the primary carrier in the health plan. Both Definity and its independent review panel had approved the procedure.
When word came late last Thursday, however, that the procedure had been denied by the secondary carrier, Pioneer Press
Publisher Larry Green convened a conference call Friday morning. The Chicago group of Hollinger International, the firm's
parent company, agreed to financially guarantee the procedure.
"We agreed to do whatever it takes to give this child a chance," said Green, who estimated the costs "could be up in the
hundreds of thousands of dollars."
Hultman expressed his gratitude on a Web site dedicated to keeping friends, family and other interested parties apprised
of day-to-day developments.
"In our very hour of need, they came through and are acting on our behalf to help us through all of this," Hultman exclaimed.
Following the news, the surgical implantation of the catheter was rescheduled for Monday. He is now in line for the transplant
- that is, the introduction of healthy stem cells. A portion of the healthy cells find their way into the brain and express
the protein that is missing or defective in ALD patients.
The transplant has been rescheduled for Feb. 5.
Both the cord and bone marrow transplants carry high risks. Patients are vulnerable to infection during the period of time
when their immune system is suppressed so as not to reject the new cells. There is also the risk that the new cells will attack
the host cells, viewing them as foreign.
Girding for battle
Because Aaron has a fascination with space exploration and aviation, Hultman has explained the boy's battle ahead in terms
his 8-year-old son can understand.
"The drugs he needs to take are going to make him very sick, and he is going to have to withstand getting sick and make
sure he doesn't get any infection," said Hultman, whose Pioneer Press advertising territory covers Evanston south of Davis
"I told him he should look on this as his first mission. That put things into perspective for him, because of all the tests
that pilots and astronauts go through."
An Aaron Hultman Fund has been established through the family's Norwood Park church. Contributions may be sent to the Aaron
Hultman Fund, Presbyterian Church of Norwood Park, 5849 N. Nina Ave., Chicago IL 60631.