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Sanfilippo Syndrome

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CALIFORNIA | LOCAL
December 26, 2002 | Charles Ornstein, Times Staff Writer
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.
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CALIFORNIA | LOCAL
December 26, 2002 | Charles Ornstein, Times Staff Writer
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.
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CALIFORNIA | LOCAL
November 23, 2002 | Charles Ornstein, Times Staff Writer
DURHAM, N.C. -- Three-year-old Tommy Bennett's only hope for long-term survival arrived Friday morning -- after days of chemotherapy, weeks of medical tests and months of fighting between his parents and their HMO. Tommy, of Ione, Calif., received a stem-cell transplant, derived from a newborn baby's umbilical cord blood, at 11:25 a.m. at Duke University Medical Center here.
CALIFORNIA | LOCAL
November 23, 2002 | Charles Ornstein, Times Staff Writer
DURHAM, N.C. -- Three-year-old Tommy Bennett's only hope for long-term survival arrived Friday morning -- after days of chemotherapy, weeks of medical tests and months of fighting between his parents and their HMO. Tommy, of Ione, Calif., received a stem-cell transplant, derived from a newborn baby's umbilical cord blood, at 11:25 a.m. at Duke University Medical Center here.
CALIFORNIA | LOCAL
October 3, 2002 | CHARLES ORNSTEIN, TIMES STAFF WRITER
John and Alicia Bennett learned Wednesday that only one of their two sons--both ill with a rare genetic disease--is a good candidate for an experimental transplant that could save his life. The Northern California couple accepted the news with the same resilience with which they have handled the devastating toll of the disease on all three of their youngsters, who range in age from 3 to 6. Children with the condition usually die by their teens, after severe brain and organ damage.
CALIFORNIA | LOCAL
September 22, 2002 | CHARLES ORNSTEIN, TIMES STAFF WRITER
Tommy Bennett spent much of his third birthday last week sedated on a hospital bed with six electrodes strapped to his head and loud noises clicking in his ears. In a nearby building, his 4-year-old brother, Hunter, was held still by strips of medical tape so X-ray technicians could photograph every part of his body.
OPINION
August 31, 2002
Re "Hard Choices in a Genetic Calamity," Aug. 25: Today's medicine will increasingly reflect new genetic treatments and hope. The insurers do not want to pay for untested treatments or for hope. Hope is not a sound business practice. There is no clear definition as to when treatment becomes something more than an experiment. Especially in rare diseases like Sanfilippo syndrome, there is less incentive for drug company research and clinical trials. We cannot, however, leave victims of rare diseases to die simply because research on their illness is not cost-effective.
CALIFORNIA | LOCAL
January 16, 2003 | Charles Ornstein, Times Staff Writer
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.
NEWS
December 7, 1986 | JEFF BATER, United Press International
Victoria Horton wears diapers, cannot feed herself and has the mind of a 6-month-old. She is 9. A cruel tumble of the genetic dice doomed Victoria and her sisters, Christina and Annie, to a short life because of Sanfilippo's syndrome, a rare terminal illness that will return them to a state resembling infancy. "They will lose all mental powers and become vegetative," said the girls' mother, Sheryl Horton.
CALIFORNIA | LOCAL
November 15, 1994 | PAUL O'BRIEN, Paul O'Brien, a lawyer and single parent, lives in West Covina with his sons, Petey and Casey.
I know a 5-year-old boy. His name is Petey. He is my son. He is also known as a "Sanfilippo's child." Several hundred children in the United States are brothers and sisters through Dr. Juan Sanfilippo, discoverer of this rare genetic disorder. While the affliction takes numerous forms, the ultimate prognosis is unbending: a vegetative state and death before the age of 20, usually from aspiration pneumonia.
CALIFORNIA | LOCAL
October 3, 2002 | CHARLES ORNSTEIN, TIMES STAFF WRITER
John and Alicia Bennett learned Wednesday that only one of their two sons--both ill with a rare genetic disease--is a good candidate for an experimental transplant that could save his life. The Northern California couple accepted the news with the same resilience with which they have handled the devastating toll of the disease on all three of their youngsters, who range in age from 3 to 6. Children with the condition usually die by their teens, after severe brain and organ damage.
CALIFORNIA | LOCAL
September 22, 2002 | CHARLES ORNSTEIN, TIMES STAFF WRITER
Tommy Bennett spent much of his third birthday last week sedated on a hospital bed with six electrodes strapped to his head and loud noises clicking in his ears. In a nearby building, his 4-year-old brother, Hunter, was held still by strips of medical tape so X-ray technicians could photograph every part of his body.
CALIFORNIA | LOCAL
November 26, 2003 | Charles Ornstein, Times Staff Writer
John and Alicia Bennett knew they would probably bury their three children, all stricken with a rare genetic disease. They never imagined they would lose Tommy first. Four-year-old Tommy, the youngest and healthiest -- the one strong enough to endure three experimental stem-cell transplants -- succumbed early Tuesday to complications of the procedures intended to save his life. "I told him that it was all right for him to go," Alicia Bennett wrote in an e-mail to a reporter Tuesday.
CALIFORNIA | LOCAL
August 25, 2002 | CHARLES ORNSTEIN, TIMES STAFF WRITER
When Tommy Bennett was born in September 1999, his parents were still trying to figure out what was wrong with his older sister, Ciara. She was slower than other children they knew. Was she hard of hearing? Or maybe autistic? Last year, lab tests confirmed that Ciara had Sanfilippo syndrome, a genetic disease that kills most victims by their teenage years. This February, the test results came back for John and Alicia Bennett's other two children.
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