Naperville students shaving heads for new brain cancer nonprofit
Two teenage girls with long locks and freshly double-pierced ears will be going bald Sunday as one of them marks her 17th birthday.
Nov. 16 is a day that lost its celebratory feel for Bridget Gustafson of Woodridge nearly two years ago when her twin brother died of a brain tumor called medullablastoma.
Michael “Mikey” Gustafson was 15 when he died in January 2013 before getting the chance to finish high school or become a scientist. But he did get to help his family start a nonprofit in his honor, and that group — the Swifty Foundation — will be the beneficiary as his twin and her best friend shave their heads.
“I'm definitely nervous, but I'm also very excited,” Bridget said. “I'm more nervous of actually just having my hair gone because hair is such a defining feature on people; it will be very different.”
Bridget said she and 16-year-old Kira Couch of Lisle have been planning since shortly after Michael's death to shave their heads during their junior year of high school so they can honor cancer patients whose treatment robs them of their hair.
Michael's hair was blond and beautiful, his family said, so losing it wasn't easy for the boy who was diagnosed with the malignant tumor at age 10.
“I know that was very hard for him to have to be bald and have everybody staring at him and watching him and wondering why he's bald,” Bridget said about her brother, with whom she has fond memories of competing in gymnastics, playing board games and enjoying the outdoors. “So I wanted to be able to feel just a tiny, tiny, tiny bit of the pain that he went through throughout his cancer.”
Sunday's head-shaving event at 1 p.m. at the Gustafsons' home is one of the first fundraisers for the Swifty Foundation, which launched a website two weeks ago, said Patti Gustafson, mother of Bridget, Michael and their brother, 19-year-old Ian. The organization's three goals are raising money for pediatric brain cancer, increasing research on the disease and encouraging parents of children who die from brain tumors to consider donating their child's tissue for scientific study.
In his short life, Michael worked to do all of those things, his mother said.
“He always wanted to be a scientist and now he wasn't going to get the opportunity, but he felt like he could still make a difference in science if he were able to fund research and have his body used in science,” Gustafson said.
So Michael raised thousands for the American Cancer Society, chose to give the money his parents Patti and Al would have spent to help him throughout his life to brain cancer research and elected to donate his body to science.
Gustafson said it could be difficult for many parents to donate their children's tissue, especially if the child dies at 2 or 3 years old and doesn't have a say. But in her family's situation, she and Al knew Michael was excited about advancing science — even after his death.
“He was of an age that he could make that decision,” Gustafson said.
The Swifty Foundation, formed in Michael's honor, already has donated to Kids V Cancer, a nonprofit group that encourages donations of tissue from children who die from brain tumors. Bridget, Kira and other friends are gaining leadership experience on the board of the foundation that took its name from a Gustafson family moniker.
“My grandpa used to call everyone in our family 'Swifty.' It just stuck to Michael,” Bridget said. “We just like it because it's a little family name.”
The nickname also lends itself to a slogan for the foundation, which says it aims to give “pediatric brain cancer a 'Swifty' kick in the pants.”
Even before shaving their heads to strengthen that “kick in the pants,” Bridget and Kira have raised more than $10,000 at Naperville North High School and online at swiftyfoundation.org.
“It was a crazy experience to see how much people cared,” Kira said.
They shattered their goal of $6,000, but they're still looking for more.
“What's really important is how underfunded pediatric cancer is,” Bridget said. “That's the entire reason we're doing the Swifty Foundation — to raise much-needed dollars.”
While researching to create the foundation, Gustafson said she discovered the U.S. “spends more money on potato chips than it does on pediatric cancer research,” a number she wants to reverse.
Kira said she also wants to make a difference in childhood cancer beyond fundraising and head-shaving. She plans to become a pediatric oncologist, a career choice inspired by Michael. She said shaving her head will give her empathy for future patients and understanding of the challenges her mother went through when she battled and beat breast cancer.
“I remember when she had to shave her head, it was like the most traumatic thing out of everything she experienced while having cancer,” Kira said. “I want to feel the tiniest amount of pain that I know Michael, my mom and so many others have felt.”
The girls said they know Sunday's adrenaline rush will be the easy part of shaving their heads. But they trust in the support of friends and family who won't judge them even when their previously long hair grows out an awkward half-inch or gets caught between a pixie and a bob.
Bridget and Kira each have an extra ear piercing, which Bridget's mom said she allowed as a new decorative element to ward off the strangeness of her daughter being nearly hairless. And the friends are keeping in mind Michael, who they remember for his smile, his laugh and his tough and upbeat handling of his losing battle with cancer.
“Everyone he met he left his mark on,” Kira said. “I know my life is very different because of him. He was such an amazing kid that I think about every day.”