THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Wednesday, February 1, 1995 TAG: 9502010022
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: BY HARRY MINIUM, STAFF WRITER
LENGTH: Long : 215 lines
JUSTIN SOKOLOWSKI will be at Scope tonight, sitting in Section 103, as he is every time the Hampton Roads Admirals take the ice. Like most fans, he'll cheer every Admirals goal, be fascinated by the fights and gobble down concession-sand food between periods.
Unlike most fans, Justin is confined to a wheelchair by a disease that will kill him.
Justin has a rare form of muscular dystrophy, leaving most of his muscles paralyzed, his bones misshapen and his limbs useless. Though he's a teenager, he weighs 29 pounds. He can move three fingers on one hand. Otherwise he is completely paralyzed.
Years ago, doctors predicted he would never live to become a teenager. They now say he'll be fortunate to celebrate two or three more birthdays.
Eventually the disease will kill him by crushing his lungs.
Justin, a junior a Kempsville High School, describes the effects of his disease better than any doctor.
``Basically, as I get older, the muscles dry up, sort of like bacon,'' he said. ``Since my muscles are weak, some parts of my body are crushed and malformed. I have a collapsed lung, and my ribs are kind of funny shaped.
``It's going to end up being fatal. They don't know how long it will take. As I've gotten older and matured, I've come to realize that I'm going to be like this for the rest of my life. So I have to make life as enjoyable as I can.''
Enjoying life to Justin means enjoying sports.
``Sports is my life,'' he said. ``I like to watch. It's sort of my way of participating.''
He's been a sports nut since he was a youngster in Cleveland, where he met NFL quarterback Bernie Kosar. A few years ago, when Kosar was in Hampton Roads on a business trip, he pulled his limousine into Kempsville Middle School to visit Justin.
Justin's bedroom is a sports museum. There are autographed pictures from dozens of athletes, including Kosar, Bruce Smith, Harry Gant, Sweetpea Whitaker, Mario Lemieux, Pat LaFontaine and dozens of Admirals. He has hundreds of hockey, football, basketball and baseball trading cards and a dozen or so posters.
Justin loves most teams from Cleveland, has been to two NASCAR races, roots hard for all Kempsville teams and is a frequent visitor to Harbor Park to watch the Norfolk Tides.
But clearly, the Admirals are his first love.
Justin's wheelchair is adorned with Admirals stickers and pins. Each time the Admirals score, he sets off a spinning red light on his wheelchair, similar to the light on the goal judge's box.
``The main reason I like them is because they're a nice bunch of guys,'' he said. ``It's sort of a piece of the National Hockey League. We don't have the same players every year, but all of the players coach Brophy brings in are good guys.''
Justin has missed only a handful of games since being induced to attend an Admirals game five years ago by former assistant coach Curtis Brackenberry. The coach approached Justin during an Admirals promotional trip to Providence Elementary School and left him complimentary tickets for about half of the Admirals games that season. Justin's had season tickets ever since.
Admirals coach John Brophy, known for his toughness as a player and temper tantrums as a coach, melts when he sees Justin.
``You look at him and realize that winning hockey games isn't the most important thing in the world,'' Brophy said. ``He's always smiling, always happy. He's a courageous kid. He loves the Admirals, and we feel the same way about him.''
Justin celebrated his 17th birthday New Year's Eve by eating at a Mexican restaurant and then attending an Admirals game.
``I don't know about the rest of our guys, but it means a lot to me that we're his favorite team,'' said Admirals center Brendan Curley, who is the player closest to Justin. ``We don't go out and try to win for Justin. It's not that way. But we think about him a lot.
Justin is totally dependent on others for most of his care, from bathing to dressing to all of his medical needs. Someone must be with him at all times.
That makes life hard on his family. Justin has no brothers and sisters, and both his parents - stepfather Gary Helfrich and mother Mary Helfrich - are in the Navy.
Mary is on a six-month deployment and Gary, a Shore Patrol supervisor, is gone each morning by 6, more than an hour before Justin leaves for school.
Gary is able to care for Justin only with a lot of help from Justin's two best friends, Kevin Criscione and Rachel Peters.
Criscione, a senior at Kempsville who lost two younger siblings to muscular dystrophy, met Justin at school several years ago. They became friends, then realized they lived only four houses apart.
Peters is a Kempsville junior and a member of the gymnastics team who hopes to work with disabled children after graduating from college.
Criscione arrives at 6 a.m. to stay with Justin, then drives him to school. He takes Justin home each afternoon and spends countless hours with him. He also accompanies Justin to most Admirals games.
Those who care for Justin must have gentle hands. Justin's bones are so brittle from the disease that they can break from the simple act of putting on a sock. He's twice been hit by pucks at Scope, including one from Curley's stick earlier this season, though both were glancing blows that did no damage.
When he catches a cold, he's usually hospitalized.
``When he gets congested, we've got to use the suction machine we've got at home,`` said Gary Helfrich. ``He puts the tube down in his lungs himself and clears himself out. His throat is so scarred from that tube. But he wants to do it himself.''
Justin does everything he can for himself. He eats by himself - he eats softened foods that Helfrich calls ``slosh'' - though it takes an hour and a half to consume a meal, perhaps an hour longer than it would take if he were fed by others.
Justin has a motorized wheelchair in which he tools around Scope, his house, school and even the shopping mall like a mini Mario Andretti.
Last week, when some of the Admirals were participating in a roller skating party at the Haygood Skating Center, Justin motored his wheelchair onto the rink. He was politely asked to return to the sidelines by rink officials.
``Justin just wants to be like other kids,'' said Libby Newswanger, who taught him American history at Kempsville Middle School. ``He's a neat kid who won't let this get him down. He was in the play ``A Christmas Carol'' (he played Tiny Tim). He ran for SCA president. He didn't win, but it took guts for him to get up there and do that.''
Helfrich built wheelchair ramps all around the family's house and installed a handicapped-equipped pool.
``It would be so easy to hide him in a corner, but the way we look at things, if Justin wants something, then we want it, too,'' Helfrich said. ``We've gotten in trouble with the school and with Social Services in Virginia Beach because we let him do so much. If he wants to go to a Kempsville football game, we let him go with a friend. Now, if you were 17, would you want your mother with you at a football game? Absolutely not. Neither does he.
Criscione added: ``I don't think about him being disabled. When I look at him, I don't even see the wheelchair anymore.''
Though he can't pick up a book or even a pen, Justin attends regular classes at Kempsville and fights his way through congested halls just like other students.
He has an aide who tests him orally, but he is given no slack by his teachers.
``If he doesn't get the work done, oh well, he doesn't get a grade because of his situation,'' Helfrich said.
Justin can't take notes, but his memory is close to being photographic. He does math problems nearly as fast as a calculator and devours sports trivia books.
``The guy is a whiz on the computer,'' Curley said. ``I went over to his house once and he just beat the crap out of me.''
Justin has a specially made joystick for the computer games, and he enjoys bowling. His stepfather will put a bowling ball on a ramp with a slide. Justin will tell him how to line up the ball and when to release it.
Shoots in the 150s.
He admits he isn't perfect. He has temper tantrums, he makes mistakes and he fights with Criscione.
``We're like brothers,'' Justin said. ``We fight constantly, over the stupidest stuff.''
Justin is accustomed to being treated as anything but a normal 17-year-old when out in public. Often, people will pinch his cheek and say, `What a cute little boy.' Peters recalls a time recently when Justin and she were playing bingo.
``At one point, a woman said, `Oh, he can read,' '' Peters said. ``Justin took it well. He said, ``Yeah, I'll be 17 soon.''
Justin says he understands.
``I look in the mirror, and I see why people would think that,'' he said. ``I look at it this way: at least they're talking to me, they're not ignoring me.
Justin can dish it out as well.
He says Curley is probably his favorite Admiral of all time but says goaltender Corwin Saurdiff is his favorite player this season.
Asked how he would explain that to Curley, who had been in a scoring slump before being injured, Justin said, ``He needs to put the biscuit in the oven.''
Justin is planning for a long and bright future. He and Peters hope to attend Bowling Green University, one of the nation's few schools with a dormitory designed entirely for handicapped students. He wants to major in business and minor in business law.
Justin plans to start his own company, perhaps one that raises money for charities. He is already a successful fund-raiser who has attracted donations of nearly $2,000 so far this school year for various causes at Kempsville.
He goes to bowling alleys, shopping centers and Admirals games selling candy and wrapping paper.
``A lot of my success has to do with the chair,'' Justin admitted. ``People tend to feel sorry for me. One of my teachers once told me that you use what you have. And I have to admit that I use my disability when I can.
``I want to own my own business, make a million dollars, then take care of my parents. That's my dream.''
He knows his life could end at any time, and though he says ``I'm not a church-goer,'' he says he's prepared to die, thanks in part to his conservative Polish-Catholic grandmother.
``I believe in God,'' he said. ``She made sure that I was baptized. I've been to first Communion, been to Sunday school.
``I know where I'm going.''
That won't make it an easier for his parents.
``It's funny, he made a bet with me,'' Gary Helfrich said with a laugh. ``He bet that he'd live longer than me, because I smoke. Who knows, maybe he's right?
``But he's realistic about his condition. He knows he's dying. He's asked that his body be donated to science.
``It will be tough when he goes. Taking care of Justin is a lot of work, but he's been worth every damn minute of it. It's gonna hurt like hell when he's gone.'' ILLUSTRATION: Color photos
CHRISTOPHER REDDICK/Staff
Justin Sokolowski does not let muscular dystrophy keep him from
enjoying as normal a life as possible, especially seeing Admirals
games at Scope.
by CNB