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At age 5, Harley Fetterman was diagnosed with an optic glioma, though it was not an aggressive type of cancer, it caused him to go blind.
At age 15, he was diagnosed with Myelodysplastic syndromes (MDS), which later turned into acute myeloid leukemia (AML).
At the age of 18, while he was undergoing a bone marrow transplant, he passed away. Now Harley’s Wallet, a nonprofit started in his name, is holding its first official fundraiser to honor his legacy of giving.
Harley Fetterman and Brandon Tomasini after one of Harley's surgeries in 2009.
Like many of Fetterman’s fellow patients, he handled his health challenges with courage and grace. And he is remembered by those that knew him as generous, funny and absolutely fearless in the face of challenge.
Fetterman had, as his mother Beth Freeborn puts it, “this personality that brought out good things in people.” He was an avid giver and his humor,
confidence and dedication to others with struggles, made him a natural advocate and leader for both cancer patients and visually impaired children. Fetterman advocated, donated to and promoted organizations that helped kids like him have a fighting chance.
“He wanted to give back to the groups that helped him out and so he did a lot of things to promote and advocate for blind people and raise money for organizations like Make-A-Wish and American Cancer Society and Dell’s Children Hospital,” Freeborn said. “He gave speeches at Relay for Life regularly.”
Brandon Tomasini, a family friend, said Fetterman had an old soul, something that made it hard to put an age on.
Harley and his dad, Kevin, after they shaved their heads at a St. Baldrick’s Foundation event to raise money for childhood cancer research.
“It’s hard to put an age on him because he was a kind of mentor to me. Because I had a lot to be thankful for and yet I was unappreciative of my life,” Tomasini said. "And by growing and getting to know him and seeing how he dealt with the obstacles in life, that we would call tragedies, it was another day for him. It was another ‘I got this,’ from him. The things that I’ve learned and accepted in my life, came a lot from spending time with this younger person. It’s crazy but he was my mentor.”
After Fetterman passed away in 2016, his mother came across something she didn’t expect to find when going through his things.
“We were in the hospital for five months and when we came home, we had everything in boxes, and when we were going through it, I found his wallet,” Freeborn said. “He had $240 in there and I thought ‘Why did he have this much money?’ and who knows why. But I left it on my desk for a longtime, just looking at it, thinking ‘What do I do with this?'' Because there’s a sentimental value that says ‘I’m just going to hold on to it and never do anything with it,’ but that’s not what Harley was about.”
Freeborn said for a long time she struggled with the loss of her son. But she eventually came up with a way to channel that grief in a way that she felt would honor her son, a nonprofit.
“For a long time I was mad. I struggled with my grief but there really is nothing I can do about what happened," Freeborn said. "It’s just life and so at some point I was trying to suppress my grief but that didn’t help, but I just didn’t feel good. I was still angry. So I’ve kind of embraced my grief because that’s my relationship with my son now, and so Harley’s Wallet is my way taking my grief and doing something good with it. This is Harley’s Wallet.
“He spent his life advocating for blind people, advocating for cancer patients, and raising money for all these organizations,” she said. “So we’re going to continue that. We’re going to do what he liked to do best.”
Harely’s Wallet was officially founded in November of 2018 with the focus of helping children fighting cancer and children living with blindness as well as their families. The nonprofit provides support for the oncology unit patients at Dell Children's Medical Center by providing Whataburger gift cards and care packages for new oncology patients as well as a National Federation of the Blind scholarship for blind students and Charts and Graphs Award for the Central Texas Regional Braille Challenge and for the National Braille Challenge.
Harley driving a buggie at VisionWorks Camp Discovery.
Now Harley’s Wallet is working to fulfill a wish for a Make-A-Wish child that wants to go to Alaska, the same Make-AWish trip Fetterman went on in 2009 to see the Northern Lights. They are hoping to raise a minimum $5,500 to fulfill the wish through the nonprofits first official event, the Harley’s 21st Birthday Bash.
Harley’s 21st Birthday Bash will be on July 2 from 6-9 p.m. at the Kings & Queens Ballroom, 442 Stolte Rd. in New Braunfels. Tickets are $40 each or $300 for a table of eight and all tickets are tax deductible. Tickets are available at Harley's Wallet's website
The event will feature a barbecue dinner, door prizes, a silent auction, live music by Tyler McCumber and Shelley King as well as casino games — including Craps, Blackjack, Roulette, Three Card and Let it Ride.
“Harley made me proud for 18 years and now it’s our turn to make him proud and that’s what
Harley’s Wallet is, my way to make him proud,” Freeborn said.
