Farewell to a Boy Who Touched Many

Nearly 200 people gathered in this rural Northern California town Tuesday to mourn the loss of 4-year-old Tommy Bennett, moved by his family’s struggle with a rare genetic disease that afflicted the boy and his two older siblings.

Mourners, including some strangers to the Bennett family, released 12 white doves and dozens of blue balloons in honor of Tommy, who died last week of complications from experimental stem-cell transplants that were his only hope for long-term survival.

“Angel Tommy, spread your wings,” one person wrote on a balloon. A little girl wrote: “I love you Tommy. I will never let go of you.”

Tommy and his siblings -- Ciara, 7, and Hunter, 5 -- were born with Sanfilippo syndrome.

The disease, which afflicts just one in 70,000 children and causes progressive organ damage, has no cure and no proven treatment.

The children’s story -- chronicled by their mother Alicia in an online journal -- has drawn the interest of thousands of people from around the world.

“God makes heroes in all sizes and ages,” said the Rev. Charlotte Bear, pastor of Ione Community United Methodist Church, during the service. “It is clear that Tommy was a true hero. He was a boy of great strength and spirit.

“All of you have left a moving and enduring chronicle of your admiration for his personal qualities,” Bear added, referring to the guest book on the Bennetts’ Web site. “His achievement, I think, is unsurpassed among children who live with chronic and terminal illness.”

Bear quoted liberally from what visitors wrote in the guest book.

“Even though I didn’t know Tommy, he along with the rest of your family became a part of mine,” she quoted one parent as writing after Tommy’s death at Duke University Medical Center in North Carolina. “I admired this little boy for his smiles.... It totally amazed me his strength and his humor.”

Jane Andersen of Laguna Beach had not met the Bennetts before Tuesday but flew in for the funeral. She said she was so moved by reading about the family’s plight in The Times last year that she had helped raise money for them since then.

“I’ve never felt that close to somebody I’ve never met,” she said.

Dressed in a shirt bearing his name, Tommy was surrounded in his white coffin by the toys he loved most: dolls, a prayer monkey, small race-cars and a wooden spoon. He would reach for the spoon, his mother said, and use it for playful sword-fighting.

The casket was escorted to the cemetery by an Ione police car and fire engine. Tommy’s father, John, is a volunteer firefighter for the city, and the Fire Department has helped raise money for the family.

Tommy’s two siblings attended the funeral with their parents, but are so disabled by the disease that they could not follow what was going on. During the interment, Ciara slept in her stroller while Hunter played in the grass.

The pastor read a eulogy written by Alyssa Boreiko, who volunteered as Tommy’s “buddy” at Duke.

“You taught me what unconditional love is,” she wrote. “When you left, so did a huge part of my heart that can never be replaced.”

Janet White, who lost her son to Sanfilippo 15 years ago when he was 17, also attended.

“You know something? You’ve got to do anything you can to save your child’s life if you believe there’s any chance,” said White, who lives in Amador County -- southeast of Sacramento -- like the Bennetts. “It was tough to be here today. It’s like watching your child again.”

Alicia Bennett said Tommy “would have loved” the service. “I was telling John as we were driving to the cemetery: ‘Everything was so Tommy,’ ” she said, right down to the song that had been written for him by a group called Songs of Love.

She said she had been taken aback by Tommy’s effect on others. “I had no idea that little boy was going to do such good for so many people,” she said.

Bennett said she will continue to push for more research into Sanfilippo. “Even after all of my three kids are gone, we’re not going to stop.”