Happy Thanksgiving.

***

http://www.wired.com/news/medtech/0,1286,61386,00.html?tw=wn_tophead_6

Time Runs Out for Tommy  

Associated Press  Page 1 of 1

11:46 AM Nov. 26, 2003 PT

DURHAM, North Carolina -- A California boy suffering from a genetic disorder
died at Duke University Medical Center after a yearlong battle that included
skirmishes with an insurance company, separation from his ill siblings and
the online support of thousands.

He had received a stem-cell transplant just last week.

The rare genetic disorder damages the heart, bones and joints; causes
children to gradually lose the ability to speak and walk; and normally kills
its carriers by their mid-teens. His sister Ciara, 7, and brother Hunter, 5,
both have the disease as well.

Doctors say it's too late to save the older siblings, so for the past year
John and Alicia Bennett of Ione, California, have focused on Tommy, their
last hope.

"He's my hero," Alicia Bennett said of her youngest child. "He did so much
for so many kids, just fighting as hard as he did."

The Bennetts overcame enormous obstacles to bring Tommy to Duke and to Dr.
Joanne Kurtzberg, a pioneer in umbilical-cord blood transplants. Alicia
Bennett left her job at a hospital while John Bennett took a leave of
absence from his job as a truck driver to spend time in Durham.

The Bennetts received money for living expenses through fund-raisers and
donations to an online journal Alicia Bennett kept. They also lost time with
their other children, who spent most of the year in California. Ciara has
declined to the point that her mother hardly recognizes her, and Hunter has
begun to get worse.

The couple also fought their health insurer to pay for the experimental
stem-cell therapy. After refusing on grounds that the $600,000 procedure was
too risky and unproven, Kaiser Permanente eventually agreed to donate $1
million to Duke for research on possible treatments.

Tommy watched a "Barney" video and played with toys while receiving the stem
cells through a chest tube last Friday. He wore a red hat with the
transplant unit's slogan: "Grow cells grow."

Doctors hoped the stem cells, culled from a newborn's umbilical cord, would
replace missing enzymes and reinvigorate his immune system.

Doctors do not know why Tommy's organs failed. Kurtzberg said Duke has
performed the procedure on 11 children with Sanfilippo syndrome over the
past three years, and that six are doing well.

Alicia Bennett said the family has donated Tommy's brain to scientists.

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