VIP: Fighting Neurofibromatosis

Family Health, Featured Article, Healthy Living
on July 20, 2012
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After school, when other mothers are shuttling their children off to soccer practice or piano lessons, Tracy Wirtanen of Appleton, Wisc., is taking her eight-year-old son Sami into the doctor’s office for another MRI. As a child suffering from neurofibromatosis (NF)—a nervous system disorder that causes tumors to spontaneously grow anywhere in the body—Sami must receive regular scans of his brain and spine to check for abnormal growths.

“He sees a lot of doctors. A lot of doctors. He’s already undergone one major surgery,” says Tracy, 46. The disease is progressive, “so you never know what you’re going to get,” she adds.

The waiting room has become a reality of Tracy’s everyday life. Sami was four-and-a half when he was diagnosed with NF, which affects only 1 in 3,000 children. For Tracy, the news that her child had a serious lifelong illness was devastating to bear.

“It was really, really hard,” Tracy recalls. “When you hear something like that, I think you sort of ‘fall down’ a bit.”

But rather than sinking into hopelessness, the mother of three got right back up on her feet. Inspired to make a difference, she rallied a group of friends and family to participate in the 2009 Race Across America, an annual 3,000 mile cross-country bike race from Oceanside, Calif., to Annapolis, Md.. Overall, Tracy’s team raised more than $50,000 for NF research. When the race was over, Tracy realized her journey had only just begun.

“All of the people who helped get us to that start line—it was amazing. When we finished the race, we thought, well, we’re not finished. We realized we could do more,” Tracy says.

In 2009, Tracy established the Littlest Tumor Foundation, a nonprofit organization dedicated to raising research funds for neurofibromatosis and empowering families who are affected by the disorder. Its motto is simple yet powerful: “Tumors in children—we do not like them.”

An emphasis on wellness is one of the foundation’s main tenets. “We advocate being smart about what you put into your mouth,” Tracy says, adding that a healthy diet may help to slow the progression of NF. “There are a lot of things in life you can’t control, but you can control your choices in terms of diet and exercise.”

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In addition to sponsoring regular walking and running events, the Littlest Tumor Foundation holds an annual wellness retreat for children who are dealing with pediatric tumors and their families. Held in Green Lake, Wisc., from August 12 to the 15, this summer’s retreat will offer activities such as guided meditation practice, yoga, nature walks and nutritional support.

According to Tracy, it is important to equip NF children with strategies for managing stress. “For my son Sami, the worst part about going to the doctor is the needles,” she says. “He’s constantly being poked and prodded. If we can teach the children to take a couple of deep breaths before receiving shots, then maybe it won’t quite be as terrifying to them.”

Outside of the foundation, wellness forms a key part of Tracy’s day-to-day life. At home, she feeds her family a mostly-vegan diet rich in fresh fruits and vegetables—“the kids love kale smoothies,” she says—and has competed in numerous marathons across the country to raise funds and awareness for NF, including the Boston Marathon.

In running, Tracy has discovered a form of release from the stress of constant doctor visits and managing her son’s condition. “It’s been a godsend,” she says.

Tracy’s fight against neurofibromatosis has been a long and rewarding adventure, one that has taken her across the country and back, even giving her the opportunity to meet with President Obama. And she doesn’t plan on giving up anytime soon: “At the end of the day, the kids are always on my mind,” Tracy says. “I’m continually amazed by how brave NF kids are. They’re truly inspiring to us all.”

To learn more about Tracy Wirtanen and The Littlest Tumor Foundation, please visit http://www.littlesttumorfoundation.com.