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February 6, 2018

Swimming With the Sharks on the Way to Utopia

By In the Loop

This fall, Nicole Ver Kuilen biked, ran and swam her way down the West Coast to raise awareness about the unmet needs of amputees and the insurance challenges they face. They’re issues she understands well, having had part of her left leg removed when she was just 10 years old.

Nicole Ver Kuilen spent last fall biking, swimming and running 1,500 miles to raise awareness about the unmet needs of amputees, and says she was changed by those she encountered along the way.


Nicole Ver Kuilen stood on a ferry looking at the Golden Gate Bridge above her and the San Francisco Bay below. Dozens of swimmers were already in the water, yellow swim caps bobbing in the waves. She needed to join them. But for Nicole, an experienced, confident swimmer, the 1.6 miles from the ferry to the shore loomed large. Perhaps because it was her first time swimming in the ocean. Or because the swim was dubbed Sharkfest. Whatever the reason, Nicole was nervous. Maybe even a little afraid.

But nerves and fear have never stopped Nicole from pursuing her goals. She took off the prosthetic leg she wears below her left knee, looked back at the documentary crew that would be filming her swim, and jumped in. "I didn't finish first," she writes in a blog post about the experience. "I also didn't finish last." Completing the swim, she writes, was "proof that strength doesn't come from what you can do. It comes from overcoming the things you once thought you couldn't."

The 1.6 turbulent miles represent just a fraction of the distance that Nicole has covered in the past year to raise awareness about unmet needs of amputees and the insurance challenges they face. She has learned all about both since having a portion of her leg removed at Mayo Clinic when she was just 10 years old. We first reported on Nicole's efforts back in October, when she was in the middle of her 1,500 mile journey, dubbed Forrest Stump. We caught up with her recently to hear about some highlights of her time biking, running and swimming down the West Coast.

"The whole experience was transformative," she tells us. In addition to the growth that came from tackling the physical challenge, Nicole says she was changed by the people she encountered on her journey, especially other athletes who've had amputations. She met many of them — including Andre Kajlich, Eduardo Garcia and Sarah Reinertsen — at the San Diego Triathlon Challenge, sponsored by the Challenged Athletes Foundation. "I'd never been around so many other amputees, especially ones who are super athletic. I felt completely accepted," she says. "It was like being in a utopia."

At the end of the three-day event, Nicole was given a running blade by some of the event's sponsors. Due to insurance limitations, she's never had a prosthetic designed specifically for running. The "amazing generosity" of the gift left Nicole "stunned," she writes on her blog. "Having access to this technology is a game changer in what I can accomplish. More than that, it's a belief in my own human potential to rise above my condition and beat what people consider a disability."

While Nicole has completed the 1,500 miles she initially set out to cover, she hasn't quite crossed the finish line with Forrest Stump. In the months ahead, she plans to go on a speaking tour to share a documentary about her journey with audiences around the country — including those in Washington, D.C. She may even have some high-profile help getting her message across: Forrest Gump himself has "mentioned he'd be interested in helping once it's time to take our story to D.C." He (well actually, Tom Hanks) also signed a movie poster for Nicole with a play on one of the film's classic lines: "Run, Nicole! Run!"

"At the end of the day, we all have limitations that we let keep us from doing what we want to do," Nicole says. She hopes sharing her story will encourage others to overcome their own limitations — physical or otherwise. "We're actually not limited," she says. "Anything is possible."

You can learn more about Forrest Stump, see photos from Nicole’s journey, and watch a video of her receiving her running blade here. Share your comments below before you use the handy social media tools to share this story with others.


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Tags: Mayo Clinic Children's Center, Osteosarcoma, Patient Stories

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