Iowa Family: "We Truly Need This Study, So We Can Know"

The following article is excerpted from the Des Moines Register, March 31, 2007, written by Register reporter Tony Leys.

Kari and Marty Dostalik aren’t waiting for a miracle.
 
They could sit around wishing someone suddenly would find a cure for Marfan syndrome, a rare condition afflicting their 7-year-old daughter, Haley.

But they know that's not how science works. Science moves ahead a step at a time, with successes and failures. Its victories are based on work and determination.

That's why the Dostaliks are volunteering to have Haley participate in a trial of a promising new drug.
 
“Even if it isn’t a cure, it’s another treatment,” Kari Dostalik says. “It is hope.”

“Potentially,” adds her husband, who is sitting across the kitchen table at their Urbandale home. Kari Dostalik nods. “That’s right,” she says. “Potentially”
Because losartan is already approved for other uses, physicians legally could prescribe it now for Marfan syndrome.

That means the Dostaliks could skip the trial and try to persuade a doctor to give it to Haley right away.

They’re not going to do that, for several reasons. One is that they’re impressed with the thorough monitoring offered to patients in the study. They also recognize the need to learn for sure how well the drug works and whether it has troubling side effects.

“If every Tom, Dick and Harry just went out and got on it, we wouldn’t know definitively,” Kari Dostalik said. “We truly need this study, so we can know.”