Aug. 14, 2004 -- Hollywood producers Doug Wick and Lucy Fisher feel like they're running a race against time for the life of their youngest daughter.
Tessa Wick, 13, was diagnosed with juvenile diabetes, a life-threatening disease, in 1999, when she was just 8 years old.
"We feel like we're on a timer," Fisher told ABC News, "because diabetes complications don't usually start for five years and Tessa is past her five-year mark this year."
Family friend Patti Davis, daughter of the late President Ronald Reagan, interviewed the family in a Primetime "My Take" feature.
More than 1 million people in America have juvenile or type 1 diabetes, a condition that occurs when the pancreas stops producing insulin, a hormone which regulates blood sugar levels.
If Tessa's blood sugar levels fall too low, she could go into a coma. And if they rise too high too often, it could wreak havoc on her organs, leading to blindness, kidney failure, heart disease or amputation.
There is no cure for juvenile diabetes, but many scientists believe that there could one day be a solution in a controversial area of medicine involving stem cells derived from human embryos.
Embryonic stems cells form soon after conception. Because they divide and become all the different cells in the human body, the hope is that they could be turned into almost any type of tissue in the body.
"Potentially, a stem cell could be developed that produces normal pancreatic cells, and those could be injected into somebody like Tessa who has juvenile diabetes, and in a sense she could grow a new pancreas," said Dr. Gary Small, a renowned physician and neuroscientist.
However, the use of stem cells raise religious and ethical questions about what constitutes a human life.
In the meantime, Tessa has become a feisty crusader for the research.
Fisher said her daughter believes that if she can help prevent other kids from suffering as she does "there will have been at least some reason why she was called upon to have her life be changed in this drastic and horrible way."
When Tessa decided to become an activist at just 9 years old, it was a call to action for the whole family: Wick, Fisher, and Tessa's two older sisters, Sarah and Julia, all got involved.
"The family would go from Senate office to Senate office and we'd all go in to make our appeal as a family and say that our daughter, their sister, is in trouble and could they please listen," Wick said.
Tessa said, "I don't want to talk to people who are already convinced, I want to see the people who aren't convinced yet," Fisher recalled.
In July 2001, Tessa, just 10 years old, joined hundreds of children with diabetes to plead for funding for stem-cell research. Along with celebrities like Mary Tyler Moore and Kevin Kline, she testified before Congress.
"Ask yourself, is the life of one child with diabetes like me or any of the other kids here less important than a cell the size of a dot?" she asked lawmakers.
But one month later, President Bush told the nation, "Stem-cell research offers both great promise and great peril. So I have decided we must proceed with great care."
The president announced federal funding for research involving existing stem-cell cultures but prevented scientists from studying new embryonic stem cells — though private funds could be used.
It was a devastating ruling for Tessa's family. "We sat in front of the television as a family and sobbed," Fisher said. "Every single one of us, as we watched him talk about taking years off our child's life."
The decision disappoints Tessa and her family to this day.
"Nobody can tell you, tell a kid to their face, 'I don't care about you enough to help you,' " she said. "The science did their part, now it's his part to take a chance on it and he hasn't."
Julia says she would try to explain to the president how a disease like juvenile diabetes might even affect a member of his family.
"It's real people who suffer every single day, every single minute with these diseases," Sarah added.
"It's really hard not to let it feel like a personal attack," Tessa said.
But the family continues to fight for a cure. "Tessa has a lot of personal strength. She has figured out ways to make jokes out of the worst situations with diabetes and be brave," her mother said.
"She's always aware of people that have it worse than she does and that's how she leads us."