After weeks of optimism, John and Alicia Bennett of Northern California learned this week that their son Tommy's experimental stem-cell transplant failed, meaning he will need another procedure to fight his otherwise fatal disease.
In November, 3-year-old Tommy became the sixth child in the nation to receive the transplant at Duke University Medical Center in North Carolina for treatment of Sanfilippo syndrome, a rare genetic disease. Tommy's two siblings -- Ciara, 6, and Hunter, 4 -- also have the disease, which affects one in 70,000 children.
Tommy will be readmitted to the hospital early next week for a second transplant, using stem cells derived from the umbilical cord and placenta of a different newborn. The stem cells contain an enzyme that Tommy's body lacks, which is needed to break down chains of sugar molecules.
Without a transplant, the molecules build up, causing progressive brain and organ damage, and usually death by the early teens. Ciara and Hunter are considered too disabled to benefit from the procedure.
Alicia Bennett said she had been nervous since the transplant because Tommy didn't suffer from many of the side effects that other children experienced. Still, she said she and her husband have no doubts about proceeding with a second transplant.
"There's no point getting upset," she said. "We just have to do what we have to do -- and then come back home with a healthy, happy kid. It's out of my hands."
Tommy was released from Duke late last month, but he and his mother have remained in North Carolina so doctors can monitor his progress. The family lives in rural Amador County, which is southeast of Sacramento.
Bennett said the most difficult part of her journey has been dealing with the recent deaths of five children treated in the hospital's transplant unit, some of whom were there at the same time as Tommy. One of those, Kyle Cottey, also had Sanfilippo syndrome and had a second transplant because his first one failed.
Dr. Joanne Kurtzberg, director of Duke's pediatric stem-cell transplant program, said Tommy's procedure failed because the boy's immune system was too strong and the donor cells couldn't take hold.
When Tommy reenters the hospital, he will receive additional chemotherapy and immuno-suppressant drugs before getting the second transplant.
The Times has been following Tommy's journey through the transplant process.
Previous stories can be found at www.latimes.com/bennett. Alicia Bennett's journal can be found at www.caringbridge.org/ca /bennettboys.