Friday, July 09, 1999

Child loses Tay-Sachs fight

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BY SAUNDRA AMRHEIN
The Cincinnati Enquirer

Kyle Hesselbrock and mother Suzanne (Enquirer file photo) | ZOOM |

        His family has spent the last 18 months raising thousands of dollars to vanquish the disease wracking his young body. Wednesday, Kyle Spencer Hesselbrock lost a long and painful battle with Tay-Sachs disease when the 33-month-old Deerfield Township boy died in his home.

        “He looked like a little porcelain baby, so perfect and beautiful,” said his maternal grandfather, Spencer Traub, zoning officer for Butler County's Union Township.

        The boy, whose blue eyes stared blankly at many fund-raisers in his name, suffered from a rare disease that attacks the central nervous system. Afflicted children lose the ability to move, swallow or breathe. They rarely live beyond age 5, dying of pneumonia or heart failure.

        For years the disease preyed largely on the Eastern European Jewish population, where one in 27 people carry the Tay-Sachs gene. Among the non-Jewish population, including Kyle's family, one in 250 people carry the Tay-Sachs gene.

        The disease has no cure, but Kyle's family spent more than a year raising $11,000 for the National Tay-Sachs & Allied Diseases Association in Massachusetts. Mr. Traub earlier this year was named fund-raising vice president of the national board of the Tay-Sachs organization.

        The family plans a follow-up on last year's “Mile For Kyle” fund-raising walks during FunFest at McGinnis Park in West Chester, where Mr. Traub is a zoning officer. This year's event is scheduled for Sept. 11. Mr. Traub also hopes to raise $100,000 at a national auction in April in West Chester.

        Kyle's mom, 25-year-old Suzanne Hesselbrock, said she and her husband, Andy, hope to release balloons in his honor this summer at the Atlantic Ocean, where she sat with him during last year's family vacation.

        “He'll always be around me, but that will be our special place,” she said.

        In appreciation for the support shown by Greater Cincinnati residents since Kyle was diagnosed in January 1998, his family is inviting the community to his memorial service.

        “Everybody has been a part of his life,” Mr. Traub said. “It's only fair they know and have an opportunity to come.”

        Visitation will be 4 to 7 p.m. Saturday at Craver-Riggs Funeral Home, 529 Main St. in Milford. Mass of Christian burial will be 11 a.m. Monday at Good Shepherd Church, 8815 E. Kemper Road in Montgomery. The body will be cremated.

        Memorials can be made to the Kyle Spencer Hesselbrock Fund at Firstar Bank, to benefit the National Tay-Sachs & Allied Diseases Association.

        Also surviving are his maternal grandmother, Alana Traub of Deerfield Township; his paternal grandparents, Richard and Claudia Hesselbrock of Colerain Township; a maternal great-grandmother, Rose Seals; and a paternal great-grandmother, Ferol Traub.

       

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