BY SAUNDRA AMRHEIN
The Cincinnati Enquirer
Suzanne Hesselbrock knew something was wrong when her son, Kyle, stopped holding up his head.
(Gary Landers photo)
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DEERFIELD TOWNSHIP -- The laughter of other children hurts the most.
In their innocent games, Suzanne Hesselbrock realizes what her son will never become: A baseball star. An honor student. A teen-ager.
"I'm never going to put him on a school bus. I'm never going to hear him call me Mom," she said. "I'm never going to be the mother of the groom."
Suzanne's 22-month-old son, Kyle, is dying of Tay-Sachs disease, a rare genetic disorder that destroys the nervous system in children before killing them by age 5.
Because there is no cure for Tay-Sachs, Suzanne and her husband, Andy, don't expect their blond-haired, blue-eyed only child to live beyond Christmas next year. At a time when Suzanne should be celebrating his first words and footsteps, she's preparing for Kyle's funeral.
But the 24-year-old mom is looking beyond her son's death.
A tearful Andy Hesselbrock: "It was like we were going along in life and hit a brick wall. I didn't want anything to happen to my boy."
(Gary Landers photo)
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Knowing the ruthless disease will win this fight and steal Kyle's life, Suzanne is on a crusade: raising more than $100,000 to help find a cure, and heightening awareness that Tay-Sachs can strike any family -- not just the Eastern European Jewish community it has stalked for centuries.
"I wouldn't trade Kyle for anything," she said. "But knowing what I know now, I would have genetic testing."
Defeating the disease won't be easy.
Tay-Sachs may be rare, but it's formidable. Suzanne knows the only way to beat it is to prevent the birth in the first place. Attempts to treat or cure it have been unsuccessful.
Right now, Kyle is the only child suffering from Tay-Sachs in the Greater Cincinnati area, where doctors diagnose it once every two or three years.
Across the country and in Canada, anywhere from 11 to 15 children of non-Jewish heritage in the general population are born each year with the disorder, said Nancy Levy, coordinator of the California Tay-Sachs Disease Prevention Program in San Diego.
It's much more common among descendants of Eastern European Jews, who 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 children who inherit two recessive genes -- one from each parent -- develop the disease.
"Most non-Jewish couples don't find out (they are carriers) until they have a child with Tay-Sachs," she said.
Long odds
Suzanne and Andy, who are not Jewish, had no idea they each possessed one recessive Tay-Sachs gene when they met and fell in love 4 1/2 years ago.
Suzanne, who grew up in Deerfield Township, was on a disastrous blind date at the Forest Fair Mall movie theater.
A sympathetic cleaning lady in the bathroom introduced Suzanne to a security guard on the sly. Suzanne and Andy, a brown-haired, blue-eyed North College Hill native, were engaged in six months and married a year later.
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BENEFIT WALK
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"Mile for Kyle" walks are planned for Sept. 12 in McGinnis Park in West Chester for the Kyle Spencer Hesselbrock fund set up through Star Bank.
There will be three 1-mile walks -- one each at 1 p.m., 3 p.m. and 5 p.m. The walks will be held during West Chester FunFest '98. Entry fees are $5 to walk and $10 with T-shirt.
More information: Call the Union Township Administration Building in Butler County, 777-5900.
Donations can be made at any Star Bank location.
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Within 14 months, Kyle Spencer Hesselbrock was born on Oct. 2, 1996 -- the Roman Catholic Feast of the Guardian Angels, Suzanne points out.
While true love is hard to come by, the chances of Suzanne and Andy's encounter might be even more rare. The odds of two non-Jewish carriers of Tay-Sachs meeting are one in 40,000. The odds of them both meeting and producing a Tay-Sachs baby are one in 160,000.
Among descendants of Eastern European Jews, the odds are worse. One in 27 people carries it, while the chances of meeting another carrier and having a Tay-Sachs child are one in 3,600 without modern testing for the gene.
Suzanne never thought to be tested for it, vaguely remembering it as a Jewish disorder from her days as a nanny for Jewish families.
Still, she knew something was wrong last year as her cherubic son stopped holding up his head.
"It was like we were going along in life and hit a brick wall," said Andy, 29, who is a dispatcher for University of Cincinnati police and a volunteer firefighter in Springfield Township.
But he held more hope than his wife as Kyle worsened.
"I was more optimistic," he said, feeding Kyle from a bottle because the boy can no longer chew. "I thought he'd snap out of it."
With Kyle lying listless in his arms, Andy admits he had been in denial.
"I didn't want anything to happen to my boy," he said as tears streamed down his face.
Doctor stumped
Many doctors are as confused by the disease's early symptoms as Suzanne and Andy were.
This spring, Suzanne helped teach a roomful of neurologists and physicians about Tay-Sachs at Children's Hospital Medical Center.
Suzanne told them how Kyle had stopped playing patty-cake last summer. How he quit rolling over on his belly and insisted on being held all the time. How she watched helplessly as something terrible rewound the reels in his brain.
"He was obviously going backward instead of forward," she said. "He was no longer sitting up or getting on his hands and knees."
Only two of the doctors in the room could figure out what Suzanne and Andy learned months before on Jan. 22. That was the day Suzanne stood frozen in her bedroom listening to the message on the answering machine from Dr. Andrew D. Hershey, Kyle's neurologist at Children's.
He told her the test results were in. Call him back.
"I was like, "Oh, God, no,"' she said. "I knew if he was calling and not the nurse, it was bad."
She called her mom. She cried. She called Dr. Hershey back, who told her Kyle had Tay-Sachs. Regrettably, there was nothing that could be done, the doctor said.
Suzanne raced to the Internet and began reading on Tay-Sachs Web sites about her son's fate. .
"I was just sitting there shocked at the statistics and the future and what was going to happen," she said.
Glaring back at Suzanne from the screen were the cold facts:
- Tay-Sachs 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, the ability to swallow or breathe. He soon becomes mentally retarded and paralyzed.
- Death comes through heart failure or pneumonia by age 5.
The next day she sat in the doctor's office, rehearing it all again.
"I felt I was just kind of losing it," she said. "I was methodically folding and refolding this tissue. By the time we left there, it was shredded apart."
Angry at God
Instead of making plans for preschool, Suzanne's life now revolves around Tay-Sachs conferences and fund raising. It is helping pull her through her grief. What isn't helping is prayer.
A once-ardent Catholic, Suzanne is too angry at God to attend church anymore.
"I believe when I'm ready to go back, he'll be waiting." The only way she can explain what's happening is that God planned for Kyle to be her guardian angel.
For now, she's watching over him. Suzanne gave up her home-cleaning service to care for Kyle and raise money.
"One of the ways of dealing with this is trying to find a cure. We know that cure is not going to come in time for Kyle. But we're not just going to stop once he's gone," she said. "We want to do everything we can to eradicate it."
A fund-raiser in March at Turfway Park Race Course in Florence generated about $15,000. The following month, Suzanne attended a Tay-Sachs conference in White Plains, N.Y.
Through a friend's business, she is sending a teddy bear around the world with Kyle's picture and information about Tay-Sachs to raise money and awareness about the disease.
"The fund raising keeps us busy and helps to take our mind off of things," she said.
Next month is a walk called a "Mile for Kyle" in West Chester, where Suzanne's father, Spencer Traub, is a code enforcement officer. Mr. Traub doesn't know where his daughter gets her strength. He admires her ability to confront things he can barely discuss without tearing up.
"She wonders if people think she's (cold) because she's so strong. But she wants the best for Kyle, and if she falls apart right now, she won't be able to accomplish her goals.
"She's got to be the best mother in the world."
Suzanne's next plan is to raise more than $100,000 through a letter drive. The money will go to the National Tay-Sachs & Allied Diseases Association in Massachusetts to help find a cure, she said.
The information, she hopes, will spur more people to get tested for the Tay-Sachs gene.
"We want to make sure it stays rare," she said.
But screening adults outside high-risk groups could be difficult, said Dr. Hershey at Children's.
"There are a number of genetic disorders, several thousands," he said. "It wouldn't be realistic to be able to check for every possible disorder."
Suzanne and Andy will never stop checking for signs of Tay-Sachs. They still want to have more children. Abortion is not an option for them, so they will forgo prenatal testing that's available early in pregnancies.
Instead, they want to try in-vitro fertilization, where embryos formed by their eggs and sperm are tested in the laboratory. Only the healthy ones unaffected by Tay-Sachs would be implanted into Suzanne.
Even though modern medicine could not pull through in time for her firstborn, Suzanne said, Kyle will always be with them.
"I don't think that the miracle is that he lives, but that the day he dies, he'll become an angel."
