When Life Is Short: Sheryl Grossman has Bloom's syndrome, a rare genetic disorder that stunted her growth and will kill her before she sees fifty. But don't underestimate her.

The Grossmans' pediatrician referred them to a dermatologist. "I give a lot of credit to that dermatologist," Karen Grossman says. "The first thing out of her mouth was, 'I don't know, but I will find out.'" The doctor consulted with colleagues on the East Coast, and after three months of testing, they had a diagnosis.

Grossman had a relatively normal childhood in Flossmoor, Illinois, a suburb of Chicago. She went to public schools and summer camp. Her parents tried to hide the news that she had Bloom's for as long as they could.

"We told her that she was small and would always be small," her mother recalls. "We told her what she needed to know, like that she needed to wear sunscreen. We never went into all the aspects until she needed information."

Grossman didn't learn the full truth until she was fourteen. "It was traumatic," she remembers. "I was angry at the world. I knew I had this condition and I was wallowing in self pity."

In her sophomore year at Washington University, Grossman discovered Paraquad, a St. Louis organization that helps disabled people live independently. "I didn't know I had the right to have the light switches in my room lowered instead of jumping up and down every time I tried to turn on the light," she says. "I felt validated. Finally, I had the tools to mitigate my condition."

That same year she met Alex Turtletaub through friends in the local Jewish community. Turtletaub, three years older than Grossman, lived in Albuquerque, New Mexico, and was also a Bloomie.

"My eyes bugged out," Grossman recollects. "It was so rare of an experience, like finding a parent who gave you up for adoption. We were more like each other than our families. It was an instant bond."

They compared their experiences and devised ways to live a normal life. They refused to participate in medical experiments or take part in what they considered unnecessary preventative treatments. "I was in college," Grossman explains. "I wanted to live my life instead of going from doctor to doctor."

Most of all, Grossman says, "Alex and I were committed to forming a support group of other Bloomies. We knew we were getting older. Not many of us make it to adulthood."

Turtletaub died of cancer five years ago. He was 30. Grossman continued her search for other patients. A year and a half ago, her friend Rabbi Hershey Novack of Wash. U. Chabad, a Jewish student organization, suggested she set up a Web site. He lent her his computer and helped her buy the domain name. Within a week, she had her first contact, from Israel.

When Grossman learned that the University of Chicago planned to host a conference in late May for the scientists who study Bloom's syndrome, she seized the opportunity to try and bring the entire far-flung Bloom's community together for the first time — not just those with the malady, but also their doctors.

Grossman's plan didn't work out as she'd hoped. The medical conference, with its presentations on genes and proteins, proved far too technical for anyone but seasoned researchers to understand. Besides, the Bloomies were more interested in getting to know each other. So while the scientists met at the University of Chicago's Gleacher Center downtown, the Bloom's contingent gathered at the University of Illinois at Chicago Medical Center.

"The doctors' research isn't really relevant to my life," Grossman says. But the scientists do have two things she needs: information the patients can pass on to their doctors at home and money. Grossman put together the Bloom's Connect conference on a $4,500 budget, most of it raised from registration fees. But if Bloom's Connect does not find financial support soon, it will die.

Jason Hesch, 26, had never met another Bloomie, but now on this blustery Tuesday morning after Memorial Day, he's about to meet six of them. Hesch is nervous. He doesn't know what to expect. He's dressed formally in a suit and tie, and sits at a folding table with Sheryl Grossman, Stacey Dentz and Melissa LaCouvee of Ontario.

The conversation progresses haltingly, and when things turn silent, they glance across the room at their parents and siblings who are introducing themselves.

For the parents, the meeting is more emotional. It is like a reunion of a family whose members have been separated far too long. Looking over at the adult Bloomies, Sandra Mysler, whose twelve-year-old son with Bloom's stayed home in Argentina, is too overwhelmed to speak.

Anne-Marie van den Hurk, from the Netherlands, begins to cry. "I just want to bring up a normal child," she says, wiping her eyes.

"It means so much to them to see an adult with this condition," Grossman will say later. "Bloom's syndrome is not a death sentence. We can live well while accepting our limitations and dealing with them." LaCouvee, eighteen, cannot stop staring at Grossman, Dentz and Hesch. She looks delighted. "She's had a hard year," LaCouvee's mother, Linda, tells the other parents. "She has no friends."

As in other families, the Bloomies' parents compare the growth and medical problems of their children and marvel at the strong physical resemblances between them. "Melissa looks just like Sheryl did ten years ago," Karen Grossman exclaims, "the spitting image."