KILLER STALKS CAJUN BABIES  

cajunpet 70M
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6/11/2005 1:51 am

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3/5/2006 9:27 pm

KILLER STALKS CAJUN BABIES


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KILLER STALKS CAJUN BABIES

TAY-SACHS


Jordan "Jordy" McClelland was born on May 17, 1988 to Kurt and Gail McClelland of Itoa, Louisiana.

"Jordy was a beautiful baby," his mother recalls. He was a happy baby with an infectious giggle, normal in every way. Ten toes, ten fingers, great expectations. He might have grown up to be a great doctor some day.

Jordy learned to sit up when he was about five months old and we were so proud of his small achievements. We never in our wildest dreams suspected that anything was wrong with him.

Then, when he was 6 months old, Jordy parents began to notice little things.

He could no longer sit up without props. He didn't move much. And then he had a seizure.

Our pediatrician in Lafayette, realizing something was wrong, sent him to Dr. Barbara Golden in Baton Rouge. She asked us hundreds of questions and examined Jordy thoroughly. Finally, she looked into his eyes and saw the cherry-red spot, typical of Tay-Sachs Disease.

Gail was planning Jordy's first birthday party when she received the news from Dr. Golden, verifying that her son did, indeed, have Tay-Sachs.

We knew nothing about this disease, but we took some crash courses as, month after month, we watched Jordy lose his ability to move, while his muscles grew weaker. Finally, he could not move at all.

Many of the Tay-Sachs babies lose their eyesight and hearing. I don't think Jordy did, however. Even in advanced stages of the disease, when we leave him with a nurse, big teardrops would come out of his eyes as he realized we were leaving.

Until his death in February 1992 at age three, we had to have around-the-clock nursing care for Jordy.

In Louisiana, Tay-Sachs is known as "the Cajun disease." Twenty-seven percent of the victims of this disease are of French-Acadian ancestry, but it also targets descendants of Central and Eastern European Jews.

During the past 10 years, information about Tay-Sachs has become more available.

In 1991, the CBS News with Dan Rather came to Jennings, to the home of Ethel Seagraves, who had nursed Jordy McClelland for two years. There, the producers filmed a documentary about Tay-Sachs, featuring Louisiana families. At the time, five know cases had been identified among babies born in Iota, Lafayette, and Lake Charles, Louisiana areas.

After this was made public, many people of Cajun heritage came forward to tell of losing relatives in the past from an unknown affliction that was called "Lazy Baby Disease." It is now believed that illness was Tay-Sachs.

Tay-Sachs is named for Dr. Warren Tay, a British ophthalmologist who discovered the cherry-red spot in the eyes of Tay-Sachs victims, and Dr. Bernard Sachs, a New York neurologist who recognized the familial nature of the disorder. Thus came the realization that babies from certain ethnic backgrounds, such as Cajuns, were particularly susceptible.

The missing Tay-Sachs gene is thought to have been carried to Louisiana with the Acadians in the Exile of 1755. There are indications that most of those affected by it were descendants of the French-Acadians who lived in the East St. Lawrence Valley of Quebec.

This stealthy, fatal disease is caused by the absence of a vital enzyme, or protein, called Hexosamindase A (Hex-A). Without Hex-A, a fatty substance of lipid builds up abnormally in the cells, especially in the nerve cells of the brain. This destructive progress begins in the fetus early in pregnancy, although it is not clinically apparent until the child is about 6 months old.

Today, a simple blood test can determine a person's Hex-A level. Confirmation of carrier status can also be made by testing serum and/or white blood cells.

At-risk couples, in which both the male and female are carriers, have a 25% chance, with each pregnancy, of producing a child with Tay-Sachs. However, the child must inherit the gene from both parents. If only one parent is a carrier, there is no chance of producing a Tay-Sachs baby.

Today, there is a lot of information about Tay-Sachs carried on the Internet. And there's also a National Tay-Sachs Foundation, plus a Louisiana parents support group.

Brenton Brown, a beautiful, blue-eyed baby boy, was born in August 1984 to Michelle and Greg Brown of Itoa, Louisiana.

"When Brenton reached 6 months," says his mother Michelle, "we noticed he was not crawling and moving around like most babies. My mother-in-law said, "Brenton acts the way old-timers describe a Lazy Baby."

We took Brenton to a pediatrician in Lafayette, who sent us to Tulane Medical Center. It was there that we meet Dr. Schrpiro, who recognized Tay-Sachs.

For the next five years, he guided us through our agony as Brenton began to lose mobility, lose muscle control and have seizures. We had to have around-the-clock help for the last three years of his life, which ended in December 1989.

During this time. the Browns also took a crash course in Tay-Sachs, and did some checking into their family's medical history. They learned there was a Hex-A carrier in both sets of Brenton's grandparents. So, when Michelle and Greg married, two carriers were united and their child was at risk.

In 1993, a young Lake Charles, Louisiana couple with the "un-Cajun" names of Terry and Penny (cole) Lyles had a little angel whom they named Kandace Brooke. Penny Lyles says Kandace was a beautiful baby and seemed normal.

When she was about five months old, she was able to sit up. But she only rolled over once, and it seemed to alarm her.

Then just before she was a year old, she had a seizure. So we went through the doctor routine for quite awhile before we got the diagnosis. Actually, it was an optometrist who discovered the cherry-red spot in her eyes, typical of Tay-Sachs children. This led the doctors in the right direction.

Kandace slowly began to lose everything she had gained, and she died just before her third birthday.

Tay-Sachs nearly always kills before a child is five years old. Jandy Leger of Lafayette, Louisiana was an exception.

Born on 1987 to Bryan and Gina Leger, Jandy lived until just after she turned 8 years old. Her mother, Gina, recalls, Jandy was slow to crawl and sit up, but she was able to turn over. Then, all of a sudden, she stopped turning over and lost her ability to hold a bottle and move well. A pediatrician sent us to a neurologist in New Orleans, Louisiana.

Bryan's Aunt was with us in New Orleans and when the neurologist mentioned the cherry-red spot in Jandy's eyes, she said, "I have heard that is a symptom of Tay-Sachs disease. I sure hope that is not the case."

But it was. After Jandy was about 2 years old, she lost all her mobility and had to have constant nursing care until her death in 1995.

Lake Charles', Louisiana first known Tay-Sachs baby was born to David and Rene Abshire in 1986.

"We had no idea what we were facing when Maigon was born," recalls Rene Abshire.

By the time she was 7 months, she was able to get up on all fours and scoot around. But soon after that, we began to notice that she did not seem to be moving as progressively as most babies her age.

That began the nightmare of diagnosis. We went to five different pediatricians and then were sent to Ochsner's where Tay-Sachs was diagnosed.

Maigon did not live to see her third birthday, but I was able to care for her myself the whole time. After we lost her, we heard about other parents - the Browns, Legers, McClellands and Lyles - and so I started a support group.

There is still such a strong bond between these parents, and we're all willing to help new parents who have a Tay-Sachs children. We push education about Tay-Sachs, because people definitely need to know that if they are in the trouble area, there is help out there for them.

All of these Tay-Sachs babies had such typical characteristics. They were beautiful babies, with porcelain-doll faces, long eye lashes and angelic smiles.

We like to think of them as God's Little Angels.

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cajunpet 70M
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6/14/2005 12:33 am

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