|
Page 2 of 2
Tommy Bennett, 4 -- mom's Web site rallied world's aid
Nanette Asimov, Chronicle Staff Writer
|
|
|
|
Four-year-old Tommy Gunnar Bennett, whose mother's online chronicle of his rare disease led a nation to root for his cure, died Tuesday at
Duke
University
Medical
Center in
North Carolina .
Death came one month after doctors declared his stem-cell transplant a success.
Tommy had Sanfilippo syndrome, a genetic disorder that allows sugar molecules to build up and destroy organs. The disease affects 1 in 70,000 children, most of whom don't live past puberty. Tommy's 7-year-old sister, Ciara, and his 5-year-old brother, Hunter, also have Sanfilippo.
Yet, Tommy had a chance. One year ago, he became the fourth person to receive a stem-cell transplant intended to cure Sanfilippo and related mucopolysaccharidoses disorders, said Tommy's father, John Bennett, a trucker and volunteer firefighter in tiny Ione, 30 miles north of Stockton in Amador County.
Although the disease had already caused developmental delays in Tommy's brain that put him at a 2-year-old level, he was still young enough that his doctors hoped the stem-cell transplant procedure could halt or even reverse the damage. His siblings, for example, are considered too old for the procedure.
But Tommy's transplanted cells failed to take hold last year, and they failed again on the second attempt a few months later.
Then, just days before doctors planned to try again in early fall, a 2- year-old died of liver complications from the procedure.
"We struggled with the decision," John Bennett said. "He'd already been through so much. But what really made the decision for me was watching his older sister and brother. They're dying.''
So on Sept. 19, one day after Tommy turned 4, he received his third transfusion of healthy cells. If all went well, doctors said, the cells would populate Tommy's bone marrow and perform correctly all the functions that his diseased cells, now removed, should have done.
"Grow, cells, grow!" wrote Alicia Bennett in her online entry for "Day 0, Third Transplant."
Within a day of that Web posting, those three words had inspired chants for Tommy around the world.
"GROW CELLS GROW!" wrote Claire, from
Surrey, England . "Go Tommy go!!!" wrote Harry and
Siena from
Bennekom, Netherlands . And Beth Anne Biggs of
Rogersville, Tenn. , wrote: "GROW CELLS GROW! Hang in there Tommy! You and your family are in our thoughts and prayers. Take Care."
They were strangers to the Bennetts. Yet there were hundreds of them -- people who each day responded in writing to the love for Tommy that poured forth from Alicia Bennett's daily, detailed, online accounts. Her postings informed the world of Tommy's vital signs, his medications, his triumphs and his setbacks. Begun more than a year ago, when she and Tommy arrived in North Carolina for what was meant to be only a temporary leave from their family in California, the journal entries grew in length and complexity.
Alice Bennett placed a colorful, smiling icon next to each bit of happy news. She added flapping butterflies, pulsing red hearts and flashing squares by important developments. And she found many opportunities, too many, for growling or crying icons. There were also photos of other sick children they met, and tributes when they "became an angel."
Those same strangers also helped the family raise money for the medical care, living and travel expenses that have left the Bennetts deeply in debt. Kaiser contributed $1 million to Duke's doctors last year, just when the Bennetts were prepared to fight the HMO for coverage. When that ran out, Duke donated medical care. But everything else, including the medical care of Hunter and Ciara, were up to the Bennetts.
On Oct. 21, they heard good news. "The transplant was a success," declared Tommy's doctor, Joanne Kurtzberg.
Newspapers wrote stories, and the Bennetts -- with hundreds who learned the news online -- rejoiced.
But Tommy was not doing well.
"They don't know why exactly, but his liver and kidneys started to fail," John Bennett said. Doctors suspect that a buildup of toxicity from the chemotherapy used to remove his diseased cells may have contributed to the problem, he said. Other possibilities are that Tommy was unable to fight off a common virus that doctors found, or that the transplanted cells created a serious condition in his liver, called graft versus host disease.
"He was the most loving little boy that you'd ever want to meet,'' his father recalled. "When his sister was not able to hold onto her sippy cups anymore, he would pick them up.''
He said that 11 children with diseases similar to Tommy's have now been treated with stem cell transplants. The very youngest are doing well and are expected to lead normal lives, he said. For that reason, the family is urging every hospital to routinely test all newborns for mucopolysaccharidoses disorders.
In addition to Tommy's parents and siblings, he is survived by his grandparents, Freda and Smokey Bennett of Pine Grove (
San Diego
County ); his grandmother, Ruth Kwist of Sutter Creek (
Amador
County ); and his grandfather, Bert Kwist, of Ione.
Alice Bennett's Web journal is at www.caringbridge.org/ca/bennettboys/index.htm.
Donations to the family may be made to Bank of America, Attention Alyssa Boreiko,
850 Willow Dr., Chapel Hill, NC
27514 .
|
|
