Huntington’s disease is a hereditary disorder in which brain cells degenerate. It can lead to dementia, involuntary movements and the loss of most normal functions. It’s caused by a genetic defect which is passed from one generation to the next. Affected individuals typically show symptoms in middle age. Death usually comes 10 to 20 years after diagnosis. There is no cure at this time.
Updated: September 24, 2012 6:25AM
When Blackhawks center Jake Dowell was in third grade in Eau Claire, Wis., he had an assignment in which he had to describe his personal hopes and dreams.
Dowell wrote that he wanted to be a professional hockey player.
‘‘His teacher said, ‘You need to have something else; you need to have a backup plan,’ ” his mother, Vicki, said.
But Dowell was stubborn.
‘‘He said, ‘No, I don’t. That’s what I’m going to do,’ ’’ Vicki said. ‘‘When he actually got his rookie card, he took it in to his teacher and said, ‘Here’s proof. I made it.’ ”
Dowell has made it through some trying circumstances. His road to becoming a key contributor for the Hawks this season has featured moments of triumph, tests of patience and emotional hurdles.
Dowell won a world junior championship with Team USA in 2004 and an NCAA championship at Wisconsin in 2006. But Dowell, a fifth-round pick in 2004, also spent three years toiling away in the minors before making the Hawks at 25.
Through all the highs and lows, Dowell’s father, John, and older brother, Luke, were on his mind. Both suffer from Huntington’s disease, a progressive and debilitating genetic disorder that can lead to dementia, difficulty speaking and involuntary movements. Life expectancy is typically 10 to 20 years after diagnosis.
Dowell had a middle-class upbringing in Eau Claire. His father, a former Division III football player, owned a collections agency, and his mother was a teacher.
There were memorable times at the family cottage, where Dowell and his brother would go tubing and try to push each other off their double tube.
‘‘That was their idea of having a good time,’’ Vicki said.
The Dowells weren’t the prototypical hockey family, either, Dowell said. They were fans of all sports, especially the NFL and the Green Bay Packers.
Hockey didn’t come easily at first. If it weren’t for the tough love of his father, Dowell said, he might have called it quits.
‘‘When I first started, I really didn’t really care for hockey a whole lot,’’ Dowell said. ‘‘When I was little, I couldn’t stop. I couldn’t skate very well. I was falling all the time, just like every kid.
‘‘I didn’t want to play hockey, but my dad didn’t want me to quit. He wanted me to just keep working at it because it was something that didn’t come easy to me. He wanted me to play one more year. If I really hated it then, I could stop. I finally saw some progression, and I just loved it.’’
After two years of taking part in hockey and other sports at Eau Claire Memorial High School, Dowell left home for the U.S. National Team Development Program in Ann Arbor, Mich.
‘‘I battled the homesick thing for quite a while,’’ he said.
But that was the least of his mental burdens. Dowell was with the program when his father, now 55, was diagnosed with Huntington’s disease in 2002. Children of those with the disorder generally have a 50 percent chance of getting it, too.
‘‘To know it was genetic, it was very scary,’’ Vicki said. ‘‘Having him be so far away, it was really hard.’’
The Dowells didn’t know it, but the disorder showed it was part of their makeup years earlier, Vicki said. It began when Luke’s overall demeanor changed when he was 14 years old. At 17, Luke had a psychotic break and became schizophrenic.
All those changes in Luke, now 27, were because of Huntington’s. In 2005, when Dowell was at Wisconsin, Luke was diagnosed with early-onset Huntington’s. The disease typically develops in middle age.
‘‘He was the reason Jake was so determined originally in hockey,’’ Vicki said. ‘‘He wanted to be as good as his older brother.’’
A very good pro
In many ways, Dowell personifies the blue-collar aspects of hockey.
‘‘He’s the guy who does all the dirty work,’’ Rockford IceHogs coach Bill Peters said. ‘‘All the stuff that doesn’t always get all the recognition and all the accolades, but things you need to do to win hockey games.’’
Dowell was the IceHogs’ captain last season. Before that, he was an assistant captain at Wisconsin.
Jack Skille, who has been teammates with Dowell at Wisconsin, with the IceHogs and now with the Hawks, said Dowell always keeps things loose with movie quotes and jokes. One time at Wisconsin, he showed up at a workout dressed like former pro wrestler Steve Austin.
‘‘He was in cutoff jeans with Timberland boots and a sleeveless shirt,’’ Skille said. ‘‘He’s known to do those things.’’
It also was at Wisconsin where Dowell’s grieving process took place, Vicki said. That’s when his father’s condition really started to decline.
‘‘Jake is just really a strong individual because of that,’’ Skille said. ‘‘You look at him every day, the attitude he has . . . it takes a really strong person to go through that every day.’’
The Badgers showed their support for Dowell by stopping at his home during bus trips north to Minnesota. There were also golf outings to raise money.
‘‘In life, when you’re given challenges, you can either turn it into a positive, or it can break you down,’’ said Wisconsin coach Mike Eaves, who has known Dowell since he joined the U.S. program. ‘‘He’s persevered. He’s climbed some tough walls to get his goals.’’
One wall was a three-year stint with the IceHogs, much of it coming after he played in 19 games for the Hawks in 2007-08.
‘‘Every year you get older and wonder if they’re writing you off,’’ Dowell said.
But he never gave up and finally got his chance this season. His family was behind him every step of the way, and he always was fighting for pucks, dropping the gloves, killing penalties and trying to score for them.
In 36 games, Dowell — the first NHL player from Eau Claire — has four goals, 14 points and a plus-10 rating. He’s also tied with forward John Scott for the team lead with six fighting majors.
‘‘I look back at the way my brother and dad are fighting their disease,’’ Dowell said. ‘‘The bottom line is feeling sorry for yourself basically gets you nowhere. That’s what I’ve learned from everything.’’
He speaks with his father a few times a week, but it’s getting tough to understand him, Dowell said. His father, though, never misses his games on TV and is rarely quiet during them.
‘‘It’s always, ‘Come on, son. Come on, son. Oh, nice!’ ’’ Vicki said. ‘‘He’s always right there with him all the time.’’
A special moment
Dowell tries not to think about the day he will find out whether he has the same disorder that has relegated his father to life in a lift chair and has landed his brother in a group home.
For the time being, he said he’ll put off tests until he and his fiancee, Carly, decide whether to have children.
‘‘Nothing is going to affect me in my hockey career, I think,’’ Dowell said. ‘‘Right now, I’m keeping up on all the research and trying to raise money for research and for some progress to find a cure for it.’’
Not a day goes by when Dowell doesn’t think about his father and brother.
‘‘It’s been an awful disease,’’ said Dowell, who made the long drive from Chicago to Eau Claire for Christmas. ‘‘It’s hard to watch that take over two people who are so close to you. It’s hard to watch them slowly deteriorate.’’
Dowell does what he can to raise awareness. He held a bowling fund-raiser last year in Rockford and plans to do something this season with the Hawks.
‘‘I want to do everything I can . . . to make sure other families don’t have to go through it,’’ he said.
The Hawks said they’ve never had to twist Dowell’s arm about doing public appearances. Instead, he offers and wants to do them.
Dowell recently spent time with 5-year-old Griffin Bohan, who has a rare, incurable form of brain cancer. Treatments have taken their toll on Griffin’s body, and he has trouble speaking and even swallowing.
‘‘It was pretty eye-opening to see a family with a child with such an extreme and tough case and disease to deal with,’’ said Dowell, who hosted the Bohans — Chicago transplants living in Denver — at a game last week against the Avalanche in Colorado. ‘‘I walked out of there feeling really good that I got to meet them and that I had some new friends.’’
Dowell made an instant connection with Griffin.
‘‘He was there for at least an hour,’’ said Mike Bohan, Griffin’s father. ‘‘[Griffin] was downright giddy when Jake handed him that game puck. . . . At this stage in the game, any moment like that is priceless.’’
Griffin held Dowell’s hand, squeezing hard.
‘‘Our goal each day is to make Griff laugh and to make him as happy as possible,’’ said Shawna Bohan, Griffin’s mother. ‘‘Jake did that for us. I wish there was something we could do to help him in his family’s battle.’’
A video of their meeting was e-mailed to Dowell’s family in Eau Claire.
‘‘After Jake spent the day with that little boy, Griffin, [John] saw the video and said, ‘If I die today, I’ll die a happy man,’ ’’ Vicki said. “He said, ‘I couldn’t be prouder of my son.’ ’’