In remembrance, celebrating a birthday bald

Every night was a slumber party at the Gustafson house when twins Bridget and Michael were little. Bridget would scale her crib like a tiny, clumsy bandit and land with a soft thud on the floor. The carpet would tickle her toes as she hopscotched the moonbeams between her and Michael’s crib. Then, she’d tumble onto his mattress like a cloud. Bridget and Michael would snuggle under the same covers and giggle.

Since he passed away, Bridget has spent more than a year of nights without Michael.

“It’s been a very long, long journey since Michael died,” Bridget Gustafson said. “I try to live every day to make a difference. Like what he wanted to do.”

Michael Gustafson passed away from medulloblastoma, a pediatric brain cancer, on Jan. 6, 2013. Now, juniors Bridget Gustafson and her friend Kira Couch are shaving their heads on Nov. 16, Bridget and Michael’s birthday, to raise money for the Swifty Foundation. When Michael was still alive, he and his parents Patti and Al Gustafson started the Swifty Foundation to address the lack of funding for childhood cancer research. The girls have already surpassed their initial fundraising goal of $6,000.

“Us shaving our heads is definitely another step forward because it’s in remembrance, and it’s also a way we can be connected with him,” Bridget Gustafson said.

Michael Gustafson never wanted another child or family to go through what he did. However, the landscape of funding for childhood cancer will have to change dramatically before Michael’s dying wish will come true.

“Americans spend more money on potato chips than they do on pediatric cancer research,” Patti Gustafson said. “If that doesn’t get everybody to take notice… It’s heartbreaking. It’s just heartbreaking.”

The Swifty Foundation has donated $125,000 to efforts surrounding pediatric cancer research, but research for childhood cancer is still wildly underfunded compared to adult cancer research. Bridget Gustafson said that as a result, some of the drugs Michael was treated with were developed 30 to 40 years ago.

This is because pharmaceutical companies are attracted to the more lucrative adult cancer business and hardly fund the development of pediatric cancer drugs at all. In addition, The National Cancer Institute spends 96 percent of its budget on adult cancers but only 4 percent on children’s cancers. After learning about the lack of childhood cancer research, Michael donated his tissue to science.

“He always talked about how he just wanted to make a difference and how in his short life, he never thought he was going to make a difference,” Bridget Gustafson said. “Obviously that’s so untrue.”

Michael Gustafson left a lasting impact, and his inspiration lives on.

When Michael died, Bridget and Kira promised each other that they would shave their heads their junior year in his memory. It represents the pain he and others with cancer have suffered. For Kira’s mom, a breast cancer survivor, losing her hair was the hardest part.

“I want to show her that the pain can be shared and you’re not in it alone,” Kira Couch said.

For Patti Gustafson, the girls’ decision is also symbolic of another lesson Michael learned when he was sick. She said that Michael would love Bridget’s decision to shave her head because he used to get frustrated when other kids worried about the little things– having too much homework or not having the latest iPhone.

“Bridget being brave enough to shave her head and face senior year – senior pictures, Prom, whatever – without her hair kind of signals that message that Michael taught her. That, you know what? All that stuff doesn’t matter,” Patti Gustafson said.