Tuesday, August 07, 2001

Waiting for another miracle




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        Jessi Martin, 4, begins each day with a needle stick. It will be the first of 10 times her mother will zip open the case Jessi calls “my buddy.” Inside is the equipment Debi Martin uses to monitor her daughter's blood sugar.

        “Diabetes is like driving a car down a narrow road with a cliff on either side,” Debi says. “Too low and you risk seizures, brain damage, coma and death. Too high and there's a chance of blindness, stroke, cardiac disease, amputation.”

        Food — regular controlled meals and snacks — are key. But emotions also contribute. Jessi saw a spider and spiked into the danger zone. Debi has been warned that adolescence will be “a special challenge.”

        From her home in Clermont County, she trades information with parents all over the world via the Internet.
Mostly at night. “We're up anyway,” she says. Checking blood sugar levels. Sometimes Jessi will suck the juice straw in her sleep. A woman in Michigan tells Debi she slips tablets into her 11-year-old son's mouth at night and whispers, “Chew, Phillip. Chew.” Trying not to wake him. Trying to save him.

No tears, no whining

        Debi has gotten good at finding the spots — the sides of Jessi's fingers and toes — that don't hurt so much. But it does hurt. And so do the insulin shots, twice a day, every day, “sometimes in my belly or my arms or my legs,” Jessi explains. As we talk, she carefully eats the 10 french fries and three chicken nuggets allowed for lunch. This follows the needle. No tears. No whining.

        What a good brave girl she is. What a smart child. What a miracle.

        Debi and her husband, Ken, both nurses, tried for years to have a baby, and Jessi is the result of in vitro fertilization. The Martins wound up with nine fertilized eggs. One of them became Jessi. The rest did not.

        Infertility clinics create and freeze thousands of such blastocysts, more than 90 percent of which never are implanted. They need a womb to become a baby. Most have been discarded.

The stem cell debate

        But in 1998, scientists at Johns Hopkins prove them capable of forming tissues that give rise to muscle, bone and nerve. Stem cell research holds the promise of treatment or cure for diabetes, heart disease, Alzheimer's, ALS, kidney disease, liver failure, birth defects. And so on.

        President Bush opposed this research as a candidate, but now he's thinking it over. A Congressional vote on funding is nearly inevitable. Debi and Jessi traveled to Washington, D.C., in June to talk to legislators. They also attended a panel discussion. When the audience was invited to ask questions, Jessi headed to the microphone.

        “Can you please find a cure for diabetes so I won't get pinchies anymore?”

        A simple request from a little girl who would rather dance than count french fries. Who would rather have a puppy than a medical “buddy.” Whose every day is a fight to stay alive. And healthy.

        Debi, who describes herself at a Right-to-Life Christian, says “I wish I could have donated those blank little balls to science, the ones we made trying to get Jessi.” Those cells, she says, are “microscopic lumber to build human beings. But they need to be attached to a person to become one.”

        Until then, they are merely imaginary children.

        Jessi is real.
        E-mail lpulfer@enquirer.com. Past columns at Enquirer.com/columns/pulfer.

       



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