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Boy Loses Long Battle to Live

Youngest of three siblings with a rare genetic condition dies during treatment. Condolences pour in from six countries.

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. "I will miss him so much, but I will be waiting to see him again, dancing on his tippy toes in my dreams."

The struggle of the Ione, Calif., family against Sanfilippo syndrome -- painstakingly chronicled by Tommy's mother in an online journal -- captured the interest of strangers from around the country and abroad. Tommy's death at Duke University Medical Center in North Carolina brought condolences and expressions of grief from more than 150 people in 26 states and six countries.

"Because of Tommy, people prayed," wrote a woman from Galt, Calif., in a guest book on the family's Web site. "Because of Tommy, people reevaluated their own lives. Because of Tommy, people gave. A pretty amazing feat for a 4-year-old little boy."

With Thanksgiving days away, writers praised Tommy's gift to them.

"I am so thankful that you shared Tommy," wrote one woman from Saugus. "I along with thousands and thousands of others grieve today.... I have three children of my own, yet through you allowing us into your life I have learned to love at a different level."

A woman from Leigh in the United Kingdom also weighed in: "My heart is so broken.... Tommy, I bet you are a beautiful angel!!"

In her e-mail, Alicia Bennett described Tommy's last hours, including her final words to him as she held him in bed.

"I told him how proud I am of him and of how hard he fought," she wrote. "I told him that he has helped so many children and he is an amazing little boy [who] opened so many doors for so many children.

"God gave him to us for a reason, and I think that Tommy fulfilled his destiny."

The Bennett family, whose story has been followed by The Times for more than a year, lost the genetic lottery. All three of their children were born with Sanfilippo -- a syndrome afflicting one in 70,000 children in which an enzyme needed to break down chains of sugar molecules is lacking. Over time, these molecules are stored in cells and begin to build up, causing progressive organ damage. As with many rare diseases, it doesn't generate much interest from researchers or drug companies.

Children with the disease become progressively disabled and are likely to die before their early teens.

The Bennetts did not find out that their eldest, Ciara, now 7, had the condition until after they had Hunter, 5, and Tommy.

The search for a cure uprooted their lives, sending them on a transcontinental journey to Duke University, where a researcher Alicia Bennett heard about was conducting experimental treatments. Their quest also pitted them against their health maintenance organization -- Kaiser Permanente -- which initially refused to cover the procedure, saying that it was risky and that there was no evidence it would work.

Under public pressure -- inspired partly by the family's appearance on NBC's "Today" show -- Kaiser agreed to donate $1 million to Duke, effectively covering the costs of Tommy's initial treatment. Duke agreed to pick up subsequent medical costs. Other donors -- organizations and individuals -- raised more than $100,000.

Even so, the family's 14-month stay at Duke ruined them financially. John Bennett took time off from his job as a trucker and struggled to meet the costs of housing, transportation and food for the family.

The family was split up, sometimes for months on end. Ciara and Hunter were deemed too disabled even to try the stem-cell procedure. Tommy, still vivacious at 3, was the only candidate well enough to benefit from the transplant and strong enough to withstand its risks.

John and the two eldest children repeatedly shuttled back and forth between Ione and Durham while Alicia stayed with her youngest.

Tommy underwent his first transplant a year ago this week after taking screening tests on his third birthday. The procedure, if successful, replaces defective cells with healthy ones and provides the enzyme that Sanfilippo patients lack.

Twice, the procedure didn't take for Tommy. But the third transplant, in September, appeared to be working, and Tommy's body began producing the missing enzyme.

Meanwhile, his older sister and brother grew worse. Ciara began to sleep most of the day and would cry when awake, requiring heavy pain medicine; she couldn't communicate. Hunter couldn't talk, and his behavior at times became uncontrollable.

In recent weeks, Tommy also took a turn for the worse -- not because of the syndrome but because of complications from its treatment.

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