To Parents, Christmas Miracle

DURHAM, N.C. —  The greatest gift for John and Alicia Bennett this Christmas didn’t come in a box under the tree. Instead it was the sight of their 3-year-old son, bald from chemotherapy, jumping on a mini-trampoline, happy just to be sprung from the hospital.

Tommy Bennett left Duke University Medical Center this week, exactly one month after receiving an experimental stem-cell transplant intended to head off early death from a rare genetic disease. He is recovering -- apparently quite successfully -- in his parents’ temporary apartment here.

The family from rural Amador County, Calif., is grateful this holiday season for what Tommy has been spared: many of the side effects and complications of such transplants -- high fevers, lethargy and even death.

“Part of me is waiting for the other shoe to drop because it just went so well,” Alicia Bennett said while sitting in Duke’s outpatient clinic, where Tommy must return every day for the next few weeks. “Nothing in our lives ever goes so well.”

From a genetic standpoint, the family has been cursed. All three of the Bennetts’ children suffer from Sanfilippo syndrome, a disease affecting one in 70,000 children in which an enzyme is lacking to break down sugar molecules. Over time, the molecules build up, causing organ damage and usually death by the early teens.

Stem cells, which are derived from the blood of a newborn baby’s umbilical cord and placenta, gave Tommy the enzyme his body lacked.

Tommy’s older siblings -- Ciara, 6, and Hunter, 4 -- were considered too disabled to benefit from the transplant, which has been performed on only six other children nationally. But doctors thought that Tommy, because of his age, stood a good chance of surviving the transplant and gaining some developmental skills that have been delayed or derailed by the disease. Doctors will not know for sure whether the transplant has worked until a year or more has passed.

During their hospital stay, Alicia Bennett remained almost constantly by Tommy’s side. She lived on Domino’s pizza, baked potatoes and other fast foods. When a bitter ice storm left much of North Carolina without power earlier this month, she and Tommy had no clean sheets, blankets or clothes.

The doctors had told her, “If everything goes well, you’ll be lucky to get out in six weeks.” The boy’s release two weeks early took his family by surprise. Alicia Bennett was delighted at his progress, but had done almost nothing to prepare for Christmas.

“Luckily, I bought a tree and put it on the table [at the apartment] before we left,” she said Monday. “Now it’s like I have to rush and go buy presents and get them wrapped. I didn’t think it was going to be smooth sailing.”

John Bennett, along with Ciara and Hunter, flew in from California Friday, but the trio have had to keep their distance from Tommy -- on doctors’ orders -- because they all had the sniffles. Tommy’s immune system isn’t strong enough to ward off even a slight infection.

“It’s too bad we got sick,” John Bennett said. “But that’s the way it goes. I’m glad it hit me and not him.”

Alicia Bennett said the situation is all the worse because the family had been separated for more than three weeks. Hunter and Ciara, whose minds and bodies have been attacked by the disease, can’t talk.

Alicia Bennett doesn’t know if they understood her “I love you” messages on the telephone. “I kept wondering, ‘Does Ciara even notice I’m not there?’ ” the mother said.

The family is ever mindful of Tommy’s good fortune, and sorry for other families not as lucky. They found out Tuesday that another child with Sanfilippo syndrome, Kyle Cottey, died the previous night from complications related to his transplant.

Alicia Bennett had grown close to Kyle’s family during the last two months, and had even bought Christmas presents for the little boy and his older brother. “I’m trying not to think about it; otherwise I’ll cry,” she told a hospital volunteer.

Other Sanfilippo families spent Christmas in the hospital. Jillian Fitzpatrick, who had her transplant a day before Tommy’s, was allowed to leave for a few hours, but she had to return. She is set to be released later this week.

“I know she’s feeling better,” Jillian’s mother, Michelle, said of her daughter. “She’s not 100% by any means, but she’s feeling better. No regrets.”

The Bennetts must remain in North Carolina for several more months so doctors can monitor Tommy’s progress. They are struck, at times, by how much has changed since Christmas 2001, when the parents knew only about Ciara’s case of Sanfilippo. Hunter and Tommy were tested that Dec. 26, and the results came back in February.

“A year ago, we were positive that Tommy didn’t have it,” John Bennett said.

Today, except for his bald head, pudgy cheeks and a tube in his chest, Tommy shows few outward signs that his immune system has been obliterated by chemotherapy, and that a new one is slowly taking hold.

“He’s doing great,” said Dr. Joanne Kurtzberg, director of the pediatric stem-cell transplant program at Duke. “He’s not had any major problems at all.”

The Bennetts said they know that Tommy’s progress is being watched by friends, family and strangers from across the country, as the case has received national publicity. People they don’t know have sent the children clothes, toys and books for the holiday. And their name is on prayer lists at many churches.

“Everybody has just taken Tommy in as their own,” his mother said. “Knowing the rest of the country was out there praying for him certainly helped.”

Previous stories on the Bennetts can be found at www. latimes.com/bennett. Alicia Bennett’s journal is at www. caringbridge.org/ca/bennettboys.