Shawny Smith was diagnosed with a rare and aggressive form of brain cancer just three weeks ago — and the 10-year-old boy from Tiverton, Rhode Island got to thinking about his wishes.
With his family and friends by his side, Shawny crossed off a very special bucket list item on Friday with a behind-the-scenes tour of YouTube Spaces in New York City — an exciting gig considering he recently launched a YouTube channel of his own to help chronicle his journey.
“It was just the best,” Shawny tells PEOPLE of his visit. “Amazing.”
And that wasn’t all — in addition to the tour, Shawny received a “really cool” welcome video made just for him from the man behind SloGoMan, his favorite YouTube channel.
“We thought it’d be really spectacular to have his favorite YouTube creator officially welcome him to the family,” Lauren Verrusio, YouTube’s head of creator and consumer communications, says of SloGoMan’s message.
Shawny stopped by with his mom, Monica Velozo, stepdad John, 7-year-old sister Chloe and a few family friends who all tagged along to see how the YouTube magic is made.
“This was perfect for them because they absolutely love YouTube,” Velozo says of her kids. “And the little sisters love it too, so it’s always, they can watch an hour together and giggle. This was a cool thing for them to be able to do together because they love it so much.”
The visit was arranged with help from GoFundMe, where Shawny’s Bucket List has been raising money (so far more than $43,000) to help check items off his list.
Shawny was taken to the hospital on Dec. 28, and on Jan. 8 was diagnosed with Gliomatosis Cerebri, a form of brain cancer with a survival rate of about 5 percent, according to St. Jude’s Children’s Hospital.
Though he will soon start radiation treatment, the disease is often resistant to treatment, and Shawny’s tumor is too large for him to be a candidate for surgery.
Despite his diagnosis, Shawny found inspiration in a popular YouTube video called “Tour the States,” which features an artist drawing a map of the country to accompany a song that mentions special things to do in each state.
“That song has always kind of put him on that path,” Velozo says. “He kept saying how cool it would be to actually do those things kind of in his own way.”
Much of the organizing has been left to Shawny’s youth football coach Josh Barbosa, who says he stepped in to take the reins “as soon as [Shawny] told [Monica] that he wanted her to be just mom.”
“It’s been fantastic. [I] cried like a baby few times,” says Barbosa, who brought his wife Kelly and kids Andrea, Josh and Kaitlynn along for Shawny’s trip in the city. “The last three weeks I think I’ve aged 10 years. But we managed to get pretty much the entire Eastern Seaboard done, and half of middle America scheduled. The biggest thing is to squeeze everything in while he can still travel. And then when he starts to slow down, we’ll do local.”
So far, Shawny has already enjoyed a trip to Philadelphia, where he not only added a puppy named Philly to the family, but got a tour of Lincoln Financial Field, where the Eagles play, and met defensive tackle Fletcher Cox, his favorite player.
“It’s been a bit overwhelming, but in a good way in that sense because it keeps his spirits up. He reads a lot of the positive messages that are out there and it kind of helps him in that sense,” says Velozo. “He’s having fun, he’s just enjoying every little bit.”
Up next for Shawny is a brief visit to Maryland to visit some family members, and then a trip to Washington, D.C. from Feb. 4-6.
In the nation’s capital, he’ll get to visit the pandas at the National Zoo and will even get a private tour of the White House — and he’s got some ideas as to how he wants the visit to go.
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“I’m gonna go there, I’m gonna sit in the chair, and I’m gonna put my feet up on [President Donald Trump’s] desk and I’m gonna say, ‘You’re fired!’” Shawny explains.
After that, he’ll head to Ohio to check out the Football Hall of Fame, and will also go to Florida to spend two weeks in Disney World before stopping by Gillette Stadium, where the New England Patriots play.
“I can’t imagine trying to do this without his team,” Velozo says. “He has a really cool team of super Avengers behind him. That’s honestly been the best part about the outreach, is I’ve gotten to be mom.”