John and Laurie Ten Berge were high school sweethearts. Ten years into their relationship they married, then decided to start a family. Laurie sailed through her pregnancy.

"I didn't have any complications," she said. "Nothing unusual, no problems or anything."

Baby Elise was born on February 5, 2003. She appeared to be perfectly healthy.

But when Elise was 3 months old, Laurie started noticing problems. By 9 months, Elise wasn't sitting up on her own. A doctor, however, told Laurie not to worry, because kids reach their milestones at different times.

Still, Laurie knew something was wrong. She had Elise evaluated by an occupational therapist, which led to an appointment with a neurologist.

"I started getting a little concerned myself," said John. "You just start wondering, 'Is everything alright?' … You don't want anything to be wrong with your child."

Then an ophthalmologist saw cherry-red spots in Elise's eyes, a telltale sign of Tay Sachs disease.

"It ended up being the final piece of the puzzle," said Laurie. "But it ended up being the piece that we probably didn't ever want to know, because it was probably the worst possible diagnosis that we could have got."

Babies with Tay Sachs lack an enzyme that's needed for breaking down certain fatty substances in brain and nerve cells. The substances build up and slowly destroy the cells until the central nervous system stops working.

There is no cure and no treatment -- only prevention.

"We can identify the carriers before they have a pregnancy or during early in the pregnancy and offer them prenatal diagnosis," said Dr. Robert Desnick.

The Tay Sachs gene is carried by about 30 percent of Ashkenazi Jews, so they are regularly tested. John and Laurie never considered getting tested, because they aren't Jewish. It turns out that that doesn't matter anymore

"Tay Sachs is not just a Jewish genetic disease," said Desnick. "It's in every ethnic demographic and religious group. … It's quite rare, but it does occur."

Dr. Robert Desnick added that Tay Sachs is now more common among non-Jews than Jews.

Laurie and John wish they'd known that fact before Elise was born.

"We could have found out right away what was wrong with her with a simple blood test, but it's not something they were looking for in the beginning," said Laurie.

Luckily, before their second daughter Caroline was born, Laurie and John had been screened for Tay Sachs. Now they want others to know the facts.

Elise is deaf and blind. She can't sit up, roll over, speak or control her muscles. She eats through a feeding tube and takes medication to control seizures. A nurse is on hand 16 hours a day to help.

Two years ago, doctors said Elise would only survive for two years.

"For a 3-year-old with Tay Sachs she actually is doing really well," said Laurie.

"I don't feel sorry for (having) this defective child. What I feel sorry for is Elise, and how she has to go through this," said John. "There's nothing that she's done ever to deserve the pain and the suffering and all the stuff she's going through."

Desnick said Tay Sachs is a brutal ordeal for parents.

"In many respects this is more a disease of the parents then it is of the child," said. "The parents watch them deteriorate, watch them suffer."

"We have to just take one moment at a time and one day at a time, and just enjoy Elise while she is here," said Laurie.

Laurie was tested and learned that she actually carries the genetic mutation common among Ashkenazi Jews, so somewhere in her heritage someone was Jewish. As for John, his mutation has not been identified or linked to a specific group.

Elise's parents are trying to raise awareness about Tay Sachs, urging people to get a blood test before conception or early on in pregnancy.

To learn more about Tay Sachs disease, visit the following Web sites:

National Tay Sachs and Allied Diseases Association

March of Dimes

National Institutes of Health