Trying To Save Their Children, Family Comes To Duke For Help

The Bennetts have come cross-country so one of their children can receive a cord blood transplant. Doctors believe the treatment is the only way to combat the disorder that has been passed on to all three Bennett children.

John and Alicia Bennett said they cherish the time they spend with their children -- Ciara, 6, Hunter, 4, and Tommy, 3.

The Bennetts said that their oldest child, Ciara, began to develop serious speech problems four years ago.

"The doctors said she has some hearing loss," said John Bennett.

When Ciara went to preschool, her teacher made a comment about symptoms of Sanfilippo, a rare genetic condition.

"I got on the Internet immediately and cried and cried," Alicia Bennett said.

For those with Sanfilippo, the body lacks an enzyme needed to process sugar and causes severe neurological problems. Studies have shown that most children with the condition die between the ages of 10 and 15.

Once Ciara had been diagnosed, there was a one in four chance that her siblings had it as well.

"I knew Hunter had it. They said Tommy doesn't have it. [Doctors said] 'We'll test him anyway, but he's not showing any symptoms,'" said John Bennett. "They were wrong."

The Bennetts did not have any treatment options. Then, they heard about a doctor at

Duke Medical Center

who performed cord blood transplants on children with the disorder.

The procedure takes stem cells from the umbilical cord after delivery.

"What we're doing is using cells as a way to develop the enzyme that they cannot make on their own," said Dr. Joanne Kurtzberg, director of the Duke Stem Cell Program.

Kurtzberg said Ciara's illness was too far advanced for a stem cell transplant, but the boys were candidates. Kurtzberg has performed four transplants on other children so far.

The Bennett's insurance company refused to cover the experimental treatment. After fighting for six months, the company donated $1 million to Duke for the procedures. By that time, Hunter's disease progressed to the point where he was no longer a candidate.

"There's no way. There's been a lot of damage done," said Alicia Bennett.

The Bennetts are fighting to save Tommy. They have temporarily moved to Durham for his transplant, but said they do not expect miracles.

"We're not expecting him to graduate from college one day, although that would be great," said John Bennett. "But if he stays where he is now and improves a little bit, we'll be pretty happy."

On Nov. 13, Tommy had his first of nine days of high-dose chemotherapy in preparation for the transplant.

For the other children who had the transplant, Kurtzberg said their progress is good, but it is too early to know for sure.