College teams influence children with chronic illnesses via Team Impact

College teams influence children with chronic illnesses via Team Impact

College

College teams influence children with chronic illnesses via Team Impact

Editor’s note: This story originally appeared in the May 2017 issue of Golfweek Magazine.

INDIANAPOLIS – Andrew Rusk was 6 years old when his mother read to him from the children’s book, “There’s a Party in Heaven.” Rusk stopped his mother somewhere in the middle and asked, “Are you telling me that there’s not going to be any more pain in heaven? And people won’t hurt?”

Karen nodded.

“Can I go now?”

It was a conversation no parent should have to have with their child. But there was Karen, telling her young son that she wanted him to stay. Only God knows when it’s time, she said.

On Feb. 25 Andrew turned 16, defying the odds of doctors who had twice given him six weeks to live. On the outside, Andrew looks like any other high school kid, but inside the mitochondrial disease that has overwhelmed his life sucks out the energy needed to maintain proper organ function.

Andrew can’t play sports or take classes in a brick-and-mortar school. He uses a $20,000 motorized wheelchair not because he can’t walk but to stave off fatigue. At 11 a.m. each day he’s hooked up to a breathing machine and lies down with his iPod to get energized for the afternoon math and science classes he takes virtually.

There’s a nurse in the Rusk home six days a week. Andrew, one of three boys, also has the company of Max, a black Lab and Whippet mix that he calls the center of the family.

Missing from Andrew’s daily life: friends.

That’s where the men’s golf team at the University of Indianapolis comes in. Outside of miniature golf and the Wii variety, the Rusks knew nothing of the ancient game.

“This is not about golf,” Indianapolis coach Brent Nicoson assured Karen. “This is about relationship.”

The connection came through Team Impact, a program that pairs children with life-threatening and chronic illnesses with college teams throughout the country. More than 1,000 children and 450 schools across all three NCAA divisions and NAIA are involved in the New England-based organization.

There’s currently a waiting list of teams looking to get matched. Larry Prout Jr. was drafted onto Michigan’s football team last October. Prout, 15, has endured more than 90 surgeries. The Wolverines surprised him with a trip to last year’s Orange Bowl in Miami Lakes, Fla., where he spent time on the sidelines.

Ten children have been matched with golf programs, including men’s teams from Arizona, UConn and Colorado.

Because Connecticut coach Dave Pezzino was diagnosed with neuroblastoma at 6 months old, the work of Team Impact hits close to home. At Colin “Pipper” Padgett’s first practice, the Huskies created a miniature golf course at their facility and gave the 7-year-old who suffers from mitochondrial disease a cut-down putter.

It wasn’t long before Pipper took the college players on a safari hunt inside Harry A. Gampel Pavilion. One player was a tiger, another an elephant.

“It blew me away,” Pezzino said.

Karen Rusk discovered Team Impact through Facebook. Nicoson presented the idea to his team after watching Indy’s soccer and baseball teams participate.

Servant leadership is a core value of Nicoson’s program, but he knew the inspiration would run both ways.

“Our kids can learn from him as much as we can help Andrew,” Nicoson said.

• • •

There’s snow on the ground outside the Rusk family home in Brownsburg, Ind. Inside, it’s beachy. Karen’s love of the sun and sand has created an oasis in suburban Indianapolis, a reminder of life outside the bubble of hospital waiting rooms and in-home healthcare.

The first sign of trouble came when Andrew was 4 months old. The first doctor said it was croup. Andrew was in and out of therapies and saw several specialists. Karen described those early months as “constant triage,” and in the middle of it all, her husband walked out.

There was Karen, a mother of three, with her oldest child, David, on the autism spectrum and her 18-month-old stricken by the unknown.

“It’s very difficult sometimes for people to handle what comes with special needs,” Karen said. The boys’ father ultimately signed away his parental rights.

When Andrew was 2½ years old, a geneticist who visited him in the hospital told Karen he believed her son suffered from a form of mitochondrial disease, but didn’t yet know specifics.

“Don’t go home and look it up,” he warned.

Karen, of course, looked it up immediately and learned that children with severe cases of the disease often don’t live past their teens. According to the United Mitochondrial Disease Foundation, every 30 minutes a child is born who will develop a mitochondrial disease by age 10.

“A common cold for a kid with mitochondrial disease can put them in the hospital and be terminal,” Karen said.

On May 7, 2005, Clint Rusk married Karen and adopted her three boys. Karen calls Clint a saint. They have a standing date on Sunday afternoons when the nurse comes. Such respites keep them sane.

Andrew’s body has started to retain fluid. Each day a nurse checks his blood pressure and weight. If he’s 5 pounds heavier in the morning, he takes a Lasix.

Upstairs there’s a cabinet in Andrew’s bedroom that’s stuffed with medical supplies. The machines next to his bed give the room a hospital vibe.

Andrew smiles as he shows off the trinkets that line his shelves – obsessions include “Jurassic Park” and “Little Mermaid” – and photos taken at MDA Summer Camp, the highlight of his year.

“One of my dreams is to grow up and work at Disney,” he said.

But first, there’s college.

• • •

A bundled-up Andrew and his mother pile into their handicap-accessible van, affectionately known as the low-rider. People often cringe at the sound of it scraping along.

“Andrew is the first one to wave and have a good time with it,” Karen said.

There’s a long flight of stairs that leads up to Indy’s indoor practice facility. On a Thursday afternoon in February, Andrew finds the team in the middle of station drills.

 

He signed with the Greyhounds in early December, and while they’ve enjoyed several outings together, this is his first visit to practice.

Adrenaline gets Andrew up the stairs. He’s the most outgoing guy in the room, and he’s soon gripping a wedge for the first time. Andrew begins chipping toward a hole cut in the artificial turf like he has done this dozens of times before. The same can be said of his putting.

“I’m not gonna lie,” Nicoson exclaims. “I’m a little shocked.”

With a box of Sour Patch Kids on the line, Andrew is challenged to make three putts in a row.

“He sucks you in,” Karen said of her son’s infectious smile.

Andrew already has added an undeniable zest to Nicoson’s practice when something truly special transpires.

Nicoson likes to end each session by having the team make 12 three-footers in a row to spell out I-n-d-i-a-n-a-p-o-l-i-s. They ask Andrew to join. He takes turns with his teammates, calmly knocking in two early putts. When it’s time for the final “s,” Andrew is the one on the line.

Miss it, and the team must start all over again.

With the Greyhounds standing behind him holding their collective breath, Andrew stands over the putt for five seconds before draining it.

“Yes!” the players shout as they come up, one by one, to give Andrew a high five.

“I hope he understands that we normally don’t get through that the first time,” junior Graham McAree said.

Nicoson addresses the team as they huddle together, their outstretched arms a show of unity.

Andrew is one of them.

• • •

Karen Rusk sat five rows behind Andrew and the rest of the team in Nicoson Hall as the Greyhounds took on William Jewell College in basketball that night. (The arena is named for Nicoson’s grandfather, Angus, who was the school’s basketball coach and athletic director for 30 years.) It had been a long time since she’d seen her son surrounded by so many friends.

To keep the communication constant between visits, the team texts Andrew notes and videos. Andrew promised a plate of homemade brownies to the next player who makes a hole-in-one.

“We can keep him in a bubble and he might live longer,” said Karen, “but if you haven’t lived, then what’s the point?”

The Greyhounds beat the Cardinals by 10 that night. The next day Karen was scheduled to have an appointment of her own. Doctors believe there’s a chance she has adult onset mitochondrial disease.

An already heavy day grew heavier.

Andrew went to bed that night under a bright red Indianapolis blanket his mom picked up at the campus bookstore. In his hands lay an old MacGregor putter, a gift from Nicoson at the end of practice.

“He’ll sleep for hours tomorrow,” said Karen, “and that’s OK.”

There are new friends to dream about.

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