For the past 15 years Oakley Resident Diane Burgis has been busy helping raise funds for Tuberous Sclerosis which her son Sam Burgis was born with. For the past two years, she has been involved with Step Forward to Cure TSC which is a local walk-a-thon in Walnut Creek. Last year, the event raised $12,000 for the cause and this year she hopes the walk will raise more funding. She is also the Chair Person of the Northern California Tuberous Sclerosis Alliance.
Local business are finding out about Sam’s condition and are offering to do fundraisers which I am told Oakley’s Black Bear Diner may be holding an event in the near future–the D’Amico’s are very involved in the community and care for the people in it and this shows. You can do your part, by helping raise for the November 3 event. Having met Sam, he is a great kid and a worthy cause to donate on his behalf.
Donate to Sam’s Cause
Sam will have been diagnosed with Tuberous Sclerosis 15 years ago this November 3rd. Tuberous Sclerosis is as common as Lou Gehrig’s disease (ALS) or Hemophilia but very few people have heard of it. Sam had seizures as a baby and since he was diagnosed Sam was found to have tumors on his brain, heart, kidneys, eyes, muscles, and skin.
This past September Sam was diagnosed with a tumor on his pancreas and in early October had that tumor removed along with part of his pancreas. The tumor was found to be malignant, a neuroendocrine tumor, the same kind of tumor that took Steve Jobs. Understandably, we have been a little busy trying to deal with all of the stuff that comes with having such a diagnosis.
We would love to have you come out and walk with us too.
Feel free to donate to my page and support the Tuberous Sclerosis Alliance. Donating through this site is simple, fast, and secure. Your support at any level is greatly appreciated! If you would like to join us on the day of the walk, just let me know. We are hoping a cure for TSC will be discovered within our lifetime… we can all help make that goal a reality!
Event Date: November 3, 2012
Heather Farm Park
10 am – Registration begins
11 am – Walk begins
Donate to Sam’s Cause
The Contra Costa Times did a nice piece a few years back on Sam which is still available in the Seattle Times online. Here is that article.
California teen beating medical odds
Boy adapts to the challenges of tuberous sclerosis.
OAKLEY, Calif. — Living with tumors that permeate his body has made 13-year-old Sam Burgis a master at adaptation.
The Oakley, Calif., 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 Children’s Hospital Oakland. “The uncertainty can be difficult.”
Burgis’s 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 Walnut Creek, Calif., area 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.”