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 adult Bloomies appear embarrassed to hear the personal details of their lives discussed so frankly by their parents. "Sheryl had a lot of trouble getting her mammogram," Karen Grossman announces to the group at large. "Do you want to tell the story, honey?" Sheryl waves her hand wearily. "No, Mom, go ahead."

The three Bloom's children have been spared the awkwardness of discussing how they feel about meeting other people who look like them. Instead, Lindsay Zaslaw, three, of Hanover, New Hampshire, and Agnes Knol, five, and Toon van den Hurk, eight, both of the Netherlands, have gone off to another room with their brothers and sisters to color and watch Asterix DVDs.

"The kids are astounded to see all the little people," reports Agnes' mother, Beatrix, during a coffee break. "When our kids saw Lindsay, they went ahhhh, because Agnes is so normal for them."

Alex Turtletaub's mother, Diane, flew from New Mexico to talk about her experiences raising an afflicted child. "I feel like Alex is here with me today," she begins during a panel discussion. "Alex played soccer before his arthritis got too bad. He was running around the field with boys twice his size. I was terrified he would get hurt. I think we do have a tendency to baby our Bloom's kids because they're small.

"My daughter accused me of babying Alex when he was 30. Mothers want to make sure everything is perfect for their children. We wanted to let him know he was loved and respected for who he was, as much as any other child."

"It's hard," says Dana Hesch, Jason's 21-year-old sister. "Last year I helped him move into his apartment. I was in charge of buying furniture and building it, since it was harder for him. He had the box from IKEA with his dresser in a cart and was trying to push it, and the whole thing tipped over. I got so frustrated. I wanted to say, 'If you weren't like this, we wouldn't be doing this.' I wanted to help. But it was hard. It sucks. But I have to stop wanting what I can't have. I have to continue to give him a hard time as his sister."

Hesch, overhearing that last sentence, playfully flips her the bird. "There's one advantage of having Bloom's syndrome," says Hesch, who hopes for a career in politics. "No one ever forgets me."

"Hey Jason," Dana asks, "if you had a choice between being you or being me, who would you want to be?" Hesch doesn't hesitate: "I'd be me."

Sheryl Grossman leans her head against the back seat of the taxi and closes her eyes. Its been a long two days. "Miss," the driver says, "you need to tell me where you're going."

Grossman opens her eyes and looks dazed. Less than an hour before, she addressed a group of scientists at the medical conference about what Bloom's Connect is trying to accomplish. The medical community understands Bloom's syndrome on a molecular level, but Grossman worries that they can't truly comprehend what it's like to live with the disease.

"The scientists have the money, the power, the clout, that we don't have," she says. "It's important for the scientists to learn from us what we need in our lives. We can give them faces and names and real-life experiences."

The influence of Bloom's syndrome extends beyond its tiny population of sufferers. Says Richard Gladstein, a Hollywood producer and founder of the Bloom's Syndrome Foundation: "It's characteristic of people with Bloom's syndrome that they get what everyone else gets, but they get it sooner."

Dr. James German, a professor of pediatrics at Cornell University, has been studying Bloom's for nearly 50 years. He was the first to realize that Bloom's is a genetic — rather than dermatological — disease. During cell division, the Bloom's gene, located on the fifteenth chromosome, causes a patient's DNA to reproduce genetic gibberish instead of an exact copy. The chromosome becomes unstable, and pieces of it break off.

This tendency toward mutation, German discovered, makes Bloom's patients particularly susceptible to cancer. What remains a puzzle is why Bloomies are so small. Their cells are normal-sized, but they have fewer of them.

In 1960 Dr. German established the Bloom's Syndrome Registry which has tracked 264 patients throughout their lifetimes. Recently renamed the Bloom's Syndrome Study Population, it remains the most complete source of information about the effects of the disease. But because of confidentiality concerns, German will not release the names of patients in the registry, even the ones who ask for their names to be made public.

German, meanwhile, is dismissive of Grossman and Bloom's Connect. "She's passing herself off as some sort of expert," he said by telephone from his New York office a week before the conferences.

Though German has become close to some Bloom's patients, including Stacey Dentz, he knows that others believe he is more interested in them as research subjects than as human beings. "Some people complain that all the registry is doing is wanting blood," he says. "Well, that's true. We want to know about the condition."