OAKLEY -- Living with tumors that permeate his body has made 13-year-old Sam Burgis a master at adaptation.
The Oakley resident has a hard time writing, so he draws and paints to express himself. He has trouble balancing, so instead of riding dirt bikes with his two brothers, they play video games.
His mother, Diane Burgis, tells him that his brain, which is filled with tumors, is like a garden with rocks: The connections can grow, but they may take some extra time because they have to find a path.
"And a nice thing for him is he has a really high threshold for pain," she says.
Burgis believes that focusing on the things Sam can do has been crucial to helping him beat the medical odds since he was diagnosed with tuberous sclerosis as an infant.
A rare and incurable genetic disorder, tuberous sclerosis causes the growth of up to several hundred benign tumors on the brain, skin and vital organs.
The disease, named after a tuber-shaped growth in the brain, affects one in 6,000 babies born in the United States and is as common as ALS, or Lou Gehrig's disease.
While people with the disease often have a normal life span, complications can cause severe mental and physical difficulties and, sometimes, death.
"You see some children who do fairly well, and at the other end, children who right from the start are having terrible problems with seizures and mental retardation," says Daniel Birnbaum, neurology chief at
Burgis' pregnancy and Sam's birth were uneventful, as was most of his first year. A few months before his first birthday, however, he suffered his first seizure while sitting in a play saucer. The seizures, together with the white spots speckled around his body, spelled tuberous sclerosis.
At the time, the disease was less understood than it is today, and the neurologist who diagnosed Sam had few words of encouragement for his mother.
"The first parents I talked to said he was going to be severely retarded and there really was not any hope," said Burgis, leader of the local environmental group Friends of Marsh Creek Watershed.
The early years were the most difficult. After medication controlled his seizures, Sam developed a tumor the size of a marble on his lip just as he began speaking. Later, when he was learning to write, two tumors appeared on his wrists.
Few people knew how to interpret the markers. A school bus driver once refused to let Sam board because he thought the preschooler had chickenpox. When Sam changed schools in second grade, students teased him and wrongly assumed he was contagious.
Today, the Delta Vista Middle School eighth-grader brushes off these kinds of reactions with a self-confidence rarely found in teenagers.
"I'm just like, 'I'm the one going through it, not them,' " he says.
Tuberous sclerosis research and awareness have come a long way. The disease now has a celebrity spokeswoman in Julianne Moore and a dedicated department at Children's Hospital. Scientists recently discovered a medicine that may be able to shrink the brain tumors.
Diane Burgis tells Sam that he has the power to inspire other families affected by the disease.
Sitting in a waiting room last month before his latest surgery to remove facial tumors, Sam and his mother met a man whose adult daughter was undergoing the same surgery. The father at first could not believe that Sam had the same disease as his mentally handicapped daughter. He asked to examine Sam's tumor-free hands, and with tears in his eyes, told the teenager how glad he was to have met him.
When he grows up, Sam wants to raise awareness about his disease, but mostly, he wants to be an artist.
"I like to put my thoughts on a piece of paper, and it's better to draw than to write," he said.
Sam will continue to grow tumors throughout his life, but adolescence, with its attendant growth spurts and hormonal changes, could be an especially risky time for him.
This month, Sam's mother will take him in for a periodic MRI scan that will tell them how the tumors are progressing. Neither seems to be dreading the checkup.
Instead, they laugh about how often he has been "under the hood" this year.
"It's a really severe disease with lots of risks and hospital visits, but if you start off with hope," Diane Burgis said, "it helps."
Contact Hannah Dreier at 925-779-7174. Follow her at Twitter.com/hdreier.