Estimated read time: 4-5 minutes
At age 4, Madison Smith touched hearts with her big doe eyes, her warm smile and a type of tumor so rare that no one knew how to help her.
The tumor taking over Madison's body, called a "neurofibroma," was rare, slow-growing and inoperable, extending from her abdomen to her neck. If it had been cancer, Madison's family could have braced themselves for chemotherapy, and sought the comfort of other parents of children with cancer. But it wasn't cancer and because doctors knew little about her daughter's disease, Madison's mother, Marcy Wallace, did the only thing she could. She set out on a desperate struggle for answers.
"If there is anyone out there that can help Madison, I'm going to find them, because that's the only way I can survive, and it's the only way I can live," Wallace said in an interview with ABC News four years ago. "Saving Madison: that's what keeps me going, is trying to save Madison."
Now, Madison is 9 and still struggling with her tumor and the illnesses that accompany it, but going strong. Her tumor is still a daily part of their lives, but the frightened little girl has blossomed. For her mother, too, four years have brought change, and a journey from desperation, to acceptance, to activism, in the form of Madison's Foundation, an organization designed to improve communication between parents and physicians, so that families of seriously ill children can learn everything they can about the illness.
Madison, of course, is an active participant in the foundation as well.
"We teach doctors how to be a good doctor to kids," she said.
The past few years have been trying for Madison and her family. Four years ago, Wallace was struggling with her own emotions and trying to comfort her sick daughter.
"I don't feel good about tomorrow," Wallace said in a home videotape the family shot. "I feel horrible about tomorrow and I feel horrible that I have to tell her."
At the time, she had to tell Madison about going for yet another test.
"You know what? We're going to get an MRI tomorrow," Wallace said.
"Noooo!" Madison, then 4, cried out on the video.
The Class Joker
Back then, each day was a gift, with Wallace not knowing how many more her daughter would have. But to her doctors' surprise, Madison has hung on.
She enjoys going to school in Los Angeles, where she says she is the class joker.
"I'm very funny and I make all my little students in my class laugh," she said. "And I'm kind of weird too."
After so many years of hospitals and tests, Madison and her mother decided the patient really needed to help the doctors. Madison's Foundation has enlisted UCLA medical students to work with afflicted children, their parents and attending physician specialists to generate accurate - and parent-friendly - data about diseases and available treatments.
"Maybe I can't help save their child, but I can help them feel like they've gotten all the information that's out there, make the most informed decision, and there's some peace in that as a parent," Wallace said.
The foundation also teaches students how to deal with sick children in a sensitive matter. Madison says she learned the hard way that doctors can say the wrong thing.
"They were talking about my tumor in front of me," Madison said. "They weren't taking care of me that much, so Mommy decided that we need to help. We need to make them a better doctor."
Like any good teacher, Madison has books, including one she wrote herself.
"Don't tell kids tests like IVs don't hurt," she said, reading from the book. "Tell them they will hurt a little bit and it will be over soon. Don't talk about kids too much in front of them. It hurts their feelings."
The family is also trying to provide resources for parents of children with life-threatening illnesses.
"We're trying to start up a database and fill it with information about rare diseases," said Hillary Zwick, Madison's sister, a college student.
Even though she's only 9, Madison is already teaching so much to so many - starting with he own mother.
"You hope that you live every day the best, but I think when you have a child like this, that you don't know how many days you have, you really, really do that, you know?" Wallace said. "You don't know what the next day is going to bring. She's taught me that."
To learn more about Madison's Foundation, go to madisonsfoundation.org. Thea Trachtenberg produced this story for Good Morning America.
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