Wednesday, May 19, 1999

Grandpa's grief over dying boy turns to good

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Man leads fund-raising against rare disease

BY SAUNDRA AMRHEIN
The Cincinnati Enquirer

Spencer Traub and grandson Kyle Hesselbrock sit in the backyard garden Mr. Traub built in Kyle's honor. (Dick Swaim photos) | ZOOM |

        DEERFIELD TOWNSHIP — Like most fathers, Spencer Traub tackled his children's problems head-on. But when his daughter told him her son had a terminal disease, threw her arms around him and cried, “Fix this, Daddy,” Mr. Traub stood helpless.

        Since that day more than a year ago, Mr. Traub has turned his powerlessness into stubborn performance. Through fund-raisers, the Deerfield Township man helped generate $11,000 for a national research organization for Tay-Sachs disease, the genetic disorder killing his 2¹/₂-year-old grandson, Kyle Hesselbrock.

        His zeal caught the attention of the National Tay-Sachs & Allied Diseases Association in Massachusetts. This month, he was appointed fund-raising vice president of the national board during the group's annual conference in White Plains, N.Y.

        Already, the 54-year-old Mr. Traub is planning a national auction to take place next year in West Chester, where he is a zoning code enforcement officer. He intends to raise $100,000 for research and other families — even though it's too late for Kyle.

        “I don't think we'll have our little guy when this happens,” Mr. Traub said. “I just feel somewhere in my life, I have to make a mark to help other people.”

Kyle's footprints in the grandpa's water garden. | ZOOM |

        Mr. Traub's first event in March 1998, at Turfway Park racetrack in Florence, raised $15,000 to help his daughter, Suzanne Hesselbrock, and her husband, Andy, a dispatcher for University of Cincinnati police and volunteer firefighter in Springfield Township.

        The young couple learned a few months earlier that the problems plaguing their blond, blue-eyed boy were fatal. Tay-Sachs, an incurable, rare genetic disorder that attacks the nervous system, shut down Kyle's blooming ability to play patty-cake, roll over or hold up his head.

        Among the non-Jewish population, one in 250 people carries the Tay-Sachs gene. Among Eastern European Jewish descendants, which historically fell prey to the disease, one in 27 people carries it. Children with Tay-Sachs rarely live to age 5.

LEARN MORE

To learn more about Tay-Sachs Disease, visit the Web site of the National Tay-Sachs & Allied Diseases Association in Massachusetts at www.ntsad.org or call(800) 906-8723.   A Tupperware bingo bash will be held from 1 to 4 p.m. Saturday at Columbia Elementary School on Columbia Road in Deerfield Township to raise money to fight Tay-Sachs. Information: Spencer Traub, 683-7486.

        Mr. Traub organized three “Mile for Kyle” walks in September that raised $10,000 for the Tay-Sachs association. A Tupperware bingo bash is scheduled for Saturday.

        “He's extremely motivated,” said Jayne Gershkowitz, the Tay-Sachs association's national executive director.

        When Mr. Traub isn't busy planning an event, he rests amid the three ponds he built in his back yard for Kyle, hoping the running water will soothe his mind and ease the knowledge that the end is near.

        “To me, it's just a memorial to him,” Mr. Traub said.

        “He knows that he can't solve this,” said Mrs. Hesselbrock, about her dad. “But fund raising is his way of fighting and his way to fix it for future kids.”

        Mr. Traub turns emotional at the sight of his grandson sitting listless with a feeding tube running up his nose. In late December, doctors gave Kyle no more than six months to live.

        “You know it's going to happen,” Mr. Traub said. “But to watch a healthy little baby go through all these changes — I can't get it out of my mind.”

Facts about Tay-Sachs

        Tay-Sachs disease is a fatal genetic disorder in children that destroys the central nervous system. It is named for Warren Tay, a British ophthalmologist, who in 1881 described a patient with a cherry-red spot on the retina of the eye. It is also named for Bernard Sachs, a New York neurologist whose work several years later gave the first description of the disease's cellular changes.

        Tay-Sachs disease is caused by an absence of an enzyme called hexosaminidase A (Hex-A), without which a fatty substance builds in the nerve cells of the brain.

        By age 2, seizures begin. The child loses vision, coordination and the ability to swallow or breathe. He soon becomes mentally retarded and paralyzed. Death comes through heart failure or pneumonia by age 5.

        Doctors diagnose Tay-Sachs disease in Greater Cincinnati only once every two or three years. In the United States and Canada, 11 to 15 children of non-Jewish heritage in the general population are born each year with the disorder. It's much more common among descendants of Eastern European Jews, who at one time gave birth to between 40 and 50 Tay-Sachs children each year before tests for the defective gene began in the early 1970s.

        Since then, their numbers have been cut to between three and six a year. In the general population the rate has stayed the same.

        Carriers can lead normal lives. Only their children who inherit two recessive genes — one from each parent — develop the disease.

       

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