Presho teen to represent Shriners Hospital at PGA event

SIOUX FALLS, S.D. (Dakota News Now) — Ask Echo Bennett about her 14-year-old son Gavin, and, like most parents, words gush like river rapids down a waterfall.

“He’s fun. Charismatic. Outgoing,” Echo said. “He’s a little opinionated. I think he gets that from me. He’s just a ball of energy. He really likes meeting people and making friends.”

Ask Echo what it’s like to be Gavin’s mom, and the river of words dries for several seconds. She sighs to gather herself, saying, “this is going to make me emotional.” Then, two powerful words drip out.

“An honor,” Bennett says.

The floodgates open again.

“I’m so proud of him — how far he’s come. He doesn’t let anything get him down. Most people would probably be not in a good mood most days. He wakes up every day, and out of every surgery, with a smile on his face, just ready to go live life again. I think that’s admirable.”

Gavin has endured 59 trips from the middle of South Dakota to Shriners Children’s Hospital in Dayton, Ohio, where he’s had over 50 surgeries — many on his face — relating to his meningococcal meningitis, the wildly infectious disease that almost killed him as an infant. The disease has left lesions all over his body and forced the amputation of his right leg.

But Gavin’s uplifting attitude through all of it earned the kid from Presho — population 474 — the nickname the “Mayor of Presho” and “Governor Gav” long ago for his ability to light up a room as a spokesman for Shriners.

Former South Dakota Gov. Dennis Daugaard saw it up close with Gavin in 2016, when the eight-year-old sat next to Daugaard as the governor signed into a law SB 28, which required children to be immunized for meningitis before being admitted into a public school for sixth grade.

This past Christmas, Gavin helped Daugaard’s successor, Kristi Noem, light the state’s Christmas tree in the rotunda at the state capital.

In less than a month, Gavin will be taking his ambassador talents to a global stage in the entertainmentcapital of the world, hitting tee shots with some of the best golfers on Earth for a day at the PGA Tour’s Shriners Children’s Hospital Open in Las Vegas.

“I don’t know how to react,” Gavin said about the upcoming trip. “The last day we are going to be there is my birthday. I can’t describe how happy I am to be able to go to Vegas and talk to world-renowned golfers.”

After the competition starts on Thursday, Oct. 12, Gavin will be one of 21 children representing the 21 Shriners Children’s hospitals nationwide. He’ll do this as a “standard bearer,” holding, operating, and walking around with a manual sign that displays the scores of the three golfers he’ll be walking with for 18 holes.

While that is cool, it will be before the tournament starts that Gavin will truly take center stage. He’ll be one of just three patients who will spend a day camped out on one of the TPC Summerlin’s par-3 holes, hitting a shot with every pro who comes by, along with the pros’ amateur playing partners in the Pro-Am event.

Asked how he feels about this, Gavin replied, “probably happy, but a little anxious about it, but not much, but mostly happy.”

Echo said Gavin was chosen for this honor because his story is such a remarkable one. He developed meningococcal meningitis at the age of six months. Doctors initially gave him a five percent chance to survive. His first surgery was on life support, with only a 30 percent chance to live.

Then, one hospital in the region told Echo and Curt that the Shriners Children’s Hospital in Dayton had the services Gavin needed. After one week, 16 days after initially being diagnosed, Gavin’s survival chances jumped to 85 percent. A week later, he awoke from a three-week coma.

Still, Echo said that during the first two of those three weeks, Gavin’s odds of staying alive were “minute to minute, hour to hour.” Echo was 23 years old and Gavin was her first born.

“Initially, it was devastating,” Echo said. “We were told he wasn’t going to survive, and if he did survive, he would need all these amputations all these negative outlooks on life. The beginning stages were definitely a parent’s worst nightmare. But when we got to Shriner’s they really flipped that on its head.”

Gavin went through 12 surgeries in nine weeks and has taken 58 trips back to Ohio for 40 more surgeries since. In 14 years, the Bennett’s have traveled almost 60,000 miles and spent almost a collective year in the hospital for Gavin’s medical procedures ranging from skin graphs to muscle flaps — mostly on Gavin’s face. It also took a ravaging toll on his legs.

Asked what it is like to live with all this, Gavin said almost nonchalantly, “It’s kind of been normal. It’s not like a major thing to worry about. It doesn’t affect me physically or mentally in any way.”

Echo said Gavin is more at ease talking about himself and his story to big ballrooms of people. In his early years, Shriners enlisted her to become a spokesperson for the hospital, highlighting not only its life-saving services but the way the operation gives kids a quality of life by giving them opportunities like Gavin’s upcoming trip to Vegas.

But by the time he was a pre-adolescent, mother and son became a speaking duo. Now, the torch has been fully passed.

“He’s very much a natural,” Echo said. “It comes very easy to him. Everyone says, ‘You have a career in this,’ so we’re always like, ‘Well, if sports don’t work out for you, buddy, you might be taking up public speaking.’

“He does very well at it. He’s articulate and he’s got a wit to him. So, when he says things, people get the jokes. Sometimes, when you’re a public speaker, people don’t always get the jokes.”

When Gavin walks in the door, Echo said, he approaches people and immediately endears himself to them, asking them, “Hey, how are you? Who are you? What are you doing? What’s your story?” He disarms and diffuses any tension that may arise with his appearance.

“His medical stuff always comes second,” Echo said. “When you meet him, you don’t first think, ‘Oh, what happened to him,’ you think ‘Who’s this kid? What’s he got going on,’ and you want to make friends and talk with him right away.”

In 2019, Gavin made the decision to allow his leg to be amputated, knowing he was to continue facing years of “limb length growth discrepancies.”

In fact, Gavin decided to add a little flare to his prosthetic right leg. His favorite snack is Pringles. One day, an uncle suggested that the leg could be a Pringles can. The folks at Shriners happily built him a maroon leg adorned with the Pringles logo. He’s also worn an L.A. Lakers prosthetic, representing Gavin’s shared favorite basketball team with his dad.

Hoops is Gavin’s first love when it comes to sports. He also enjoys baseball, and threw out the first pitch at a Dayton Dragons baseball game.

There were times when Echo and Curt considered moving Gavin and his two younger brothers from Presho — where the parents, and their parents have lived most of their lives — to Dayton. But they didn’t want to move away from family, especially the grandparents who have become babysitters and fill-in caretakers when Echo and Curt want some much-needed time to themselves.

They also feel loyal to Presho — 178 miles west of Sioux Falls — despite the rigors of constant travel.

“It’s a community,” Echo said. “Everybody really rallied around us, especially initially. The children he grew up with — all their parents made sure there was never any bullying situations. Everybody just understood Gavin might need a little more help, or he might be a little slower on the tee ball field.”

But after the leg amputation, Gavin gradually showed interest in golf. He’s not an avid viewer of the PGA Tour (yet), but he likes going out to play and practice at Medicine Creek in Presho.

”It’s probably the best sport that I can be active in and enjoy,” said Bennett matter-of-factly.

While both he and his parents are excited to see their first PGA Tour event and their first-ever trip to Las Vegas, Echo said, “it’s hard to explain the excitement because it hasn’t happened yet, but, Oh, we’re giddy for it.”

A Happy 15th Birthday it will be, indeed.

The Shriners Children’s Open is Oct. 12 through 15, and it will be televised nationally on The Golf Channel. Gavin can’t wait to tell more people his story, from the pro golfers to the amateurs, to the TV cameras.

His message will be the same as it has been for years:

“Try to live your life the best you can with the disabilities that have been given to you,” Gavin said.

Editor’s note: Every penny of Gavin’s medical expenses and his family’s travel has been paid by Shriners Children’s Hospital. A large chunk of that comes from donors. You can donate at https://donate.lovetotherescue.org/fundraiser/4858400