Kelly Hilinski can see his future
Hilinski's grandmother's last words to him changed the direction of his life
Few words were spoken, but it's still the conversation that shapes Kelly Hilinski's life.
Then just 11 years old, Hilinski was called to the bedside of his ailing grandmother, Linda Randolph. It was just the two of them there. She couldn't speak. ALS, better known as Lou Gehrig's disease, took that away from her. It took away nearly all of her voluntary muscle control.
Except Nana Randolph, as he affectionately calls her, still had enough strength to do things that changed Hilinski's life.
"It was impossible for her to smile -- the muscles didn't work -- but the first thing she did was smile at me," Hilinski said. "I'm sure if you look back it was probably a grimace -- she never really had a beautiful Hollywood smile -- but when I saw it, it was the most amazing thing I've ever seen. It shouldn't have been possible.
Randolph then took Hilinski's hand and held it. She pointed to the board of letters she used to communicate with her family, and delivered one lasting, profound message to her oldest grandson.
"I remember one of the last things she said to me before she passed away," Kelly recalled. "She couldn't speak, so she pointed to the letters spelling 'I love you.'
"And right before I left she pulled me aside and spelled out 'Be a legend.'"
Hilinski, now 17 years old and a rising senior at Sherman Oaks (Calif.) Notre Dame, intends to do just that. He intends to be the one to finally find a cure. That's why he wears the source of his inspiration on his left wrist.
"That's why I wear this as a constant reminder of her and of the way I want to live," Hilinski said.
He then rolled up his sleeve and pointed to white and Yankee-blue band.
Gehrig's Grit. Never Quit. Beat ALS.
Gehrig's GritEvery McDonald's. Every McDonald's.
"We'd get a cone because that was the only thing she could eat and swallow and get down," Kym said. "Every time we'd see a McDonald's we'd laugh and pull off and get a cone."
The family wanted Randolph to experience Williamsport before she passed. When Hilinski was 10, his Little League baseball team was one of the best in California, and Kym felt maybe if Kelly were 12 instead of 10, his team might have gone to Williamsport.
She wanted her mom to see the home of the Little League World Series, to think about what might be one day
Randolph was in a wheelchair and could not walk. Still, the family was inspired that she wanted to make the trip even in her condition.
Kym Hilinski calls her mom a "go-getter." As a single mother, Randolph raised three girls. When her three daughters grew older, she went back to school and earned her teaching certification at 50. She taught second through fifth grades.
"That was the hardest thing," Kym said, "to see her finally achieve her dream of becoming a teacher and helping others and then passing away at 60."
Randolph never stopped fighting. Before moving to Maryland, she would go to Kelly and his two brothers' football and baseball games in a wheelchair.
"She's the loudest lady in the stands," said Mark Hilinski, Kelly's father, smiling.
Kelly watched as the disease took his grandmother quickly. ALS targets nerve cells and pathways in the brain and spinal cord. It causes patients to lose voluntary muscle control and movements, and in the later stages leaves them paralyzed. Diagnosed in 2003, Randolph died less than two years later.
Kym sees a lot of Nana Randolph in Kelly, especially that fight, that grit.
Kelly often talks about feeling slighted growing up as a quarterback. Now 6-foot-6, he said he had always been tall for his age and was put at tight end first. Most felt he was not coordinated enough to play quarterback.
"I was sick of it," he said.
Now Hilinski has an Arkansas offer and interest from Oklahoma, Colorado and Duke, where quarterback guru David Cutcliffe -- mentor to the Manning brothers -- coaches. He's recently visited Colorado and Duke, and Ivy League programs Harvard and Yale want him, too.
"If you look at the band, it says 'Gehrig's Grit,' and that's exactly what he does," Kym said. "He has a work ethic just like my mom."
Never quitNick Monica has known Hilinski since the summer before their freshman year at Notre Dame. The two are best friends: Hilinski the quarterback and Monica his tight end.
He remembers the first time they pulled a fast one on a basketball referee.
"It was a summer tournament at Burbank, and the refs are more strict in basketball and he had it on his arm," said Monica, who salutes his own grandfather by wearing his old No. 33 at Notre Dame. "I had one of those shooting sleeves and was wearing it on my arm, so the refs came around and said you're not allowed to wear a sleeve unless there's a problem with your elbow.
"So I flipped it to him and told him to say he has tendinitis in his elbow."
Now Monica has made it part of his game-day ritual. Hilinski gave a band to Monica, but it snapped not long after. Much like Hilinski, though, Monica does not throw away the broken bands.
"I stick it in my sock ... usually before every game. I didn't want to replace it. It was special," Monica said.
Hilinski doesn't know either.
"I think he may think I kind of forgot about the band, showered and never put it back on," Monica said. "To be honest I'm waiting for the right moment to tell him.
"This might be it."
Hilinski, who along with his brothers wears No. 4 in honor of Gehrig and Randolph, does not take the band off. Kym recalled a time when Hilinski frantically called her because the band snapped and had fallen off.
Kelly believes it was a baseball semifinal when he realized his band had fallen off during warm-ups. Kym, at home, received a call. She had 30 minutes to drive to a Huntington Beach -- an hour away.
Without trying to make it too cliché, Kelly said he remembers pitching well that game and getting the win.
"It's not superstitious," Kym said. "He feels complete. It's his guardian angel."
And his inspiration.
"You'll see me finish every play, every rep. You'll never see me not go 100 percent because if I don't, it's right here, it's burned into my skin," Kelly said pointing to the band and the pasty tan line it has left from sitting on his arm in the Southern California sun.
"It's defined who I am today."
Beat ALSPeople gravitate to Helinski. It's always been that way.
That's why Kym knows he is the right person to help lead a movement to find a cure for ALS. It's become a passion for him. If he hears about ALS walks, he's in. If there's a way he can help the cause, he'll sign up.
And Hilinski has only one demand from college coaches recruiting him. He is going to major in pre-medicine when he enrolls in college, and if a coach is unwilling to make that allowance, well, don't bother calling.
"If they do, I'm not going to that school," he said.
"Every campus I've visited from freshman year to now, I'm always asking how's the pre-med program, what are the ways into the hospital or internships. In Colorado, we spent two hours of the tour, almost three hours, talking with counselors and the head of the pre-med department. It means a great deal to me." Kym said she always had a feeling Kelly would be a doctor. Unlike most children, growing up, he was amazed with each trip to the doctor's office. He then received an up-close look into medicine around age 8.
Kelly's dad was a high school quarterback before a routine physical showed a problem with his heart. An aortic valve needed to be surgically replaced. Mark Hilinski would gain clearance to play, but he was forced to move to defensive end and linebacker after another quarterback took his old spot. Not a problem for Mark, who starred on defense and was recruited by California.
But his heart problem reared its ugly head again, and he opted for surgery 10 years ago.
"[Kelly] had been around all the stuff I had to go through," Mark said. "My surgery was a 12-hour ordeal. They take you down and put you on the heart-lung machine."
Kelly remembers he did not understand the severity of it, but called the surgery "the longest time of my life."
"I remember walking out of the hospital at UCLA and getting out of there as an 8-year-old kid. I was so sad I couldn't help my dad, and I think it translated into I wouldn't want any other family to go through that," he said. "I wouldn't want another dad to not come out of that surgery. It sparked something small.
"Then my grandma pushed it over the edge."
He now had his direction.
"ALS is such a nasty disease and it comes on so strong. I think that's when he said, 'I'm going to solve this. I'm going to fix this,'" Mark said.
Said Kelly: "I feel like I need to do something to help. ... When you see the negative effects and the toll it took on her and our lives as well, it was a terrible disease. My personal goal in my life is to find a way to beat it.
"When my time is done here, I want to say I really made a substantial impact on this disease and hopefully bring it to an end."
Kelly Hilinski wants to be a legend.
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