By Kelsey Duckett
CHICAGO — The dream, alive. The disease, debilitating and deadly.
Every player fortunate enough to make it to the National Hockey League is tested. Each player faces adversity throughout their career, but for Chicago Blackhawks center Jake Dowell — the adversity on the ice is only the beginning.
Dowell has, for the better part of the past decade, lived with the threat of Huntington’s Disease, a genetic disorder that affects the neurons in the body. When the disease sets in, the body’s movements become uncoordinated and jerky until it leads to a total loss of normal physical function.
The disease has already taken hold of Dowell’s 55-year-old father, John, and 28-year-old brother, Lucas. John can no longer speak clearly and relies on 24-hour care. While Lucas, who suffers from juvenile-onset Huntington’s, which brought on bipolar schizophrenia, is confined to a group home near his parent’s house in Eau Claire, Wis.
Jake has a 50 percent chance of developing Huntington’s, but will not be tested for the disease at this time. Huntington’s disease is a genetic disorder. It is progressive and degenerative and has no known cure.
Once diagnosed, the life expectancy of someone suffering from Huntington’s is drastically reduced — the majority of patients die within 10 to 20 years from the onset of symptoms.
Jake, a gifted athlete and fifth-round draft pick by the Chicago Blackhawks in 2004, who played his collegiate career for the University of Wisconsin Badgers, is charismatic and humble. And each time he laces his skates, he knows his biggest fan; his father, is watching.
A typical father-son relationship growing up, Jake said since John has been sick he has become an inspiration and one of Jake’s biggest heroes.
“My Dad has been nothing but supportive, he has been so courageous and inspiring,” he said. “He lives to watch hockey games, and we have gotten so close through that. I know he is my biggest fan, and it means the world to me that he has been able to be a part of my successes on and off the ice.”
Dowell has seen great success in his career, winning a world junior championship with Team USA in 2004, an NCAA championship at Wisconsin in 2006, and being a part of the Chicago Blackhawks Stanley Cup championship in 2010 — but he also spent three years toiling away in the minors before securing a spot on the Hawks roster this season.
Now 26, Dowell, isn’t the type of player you can judge by the back of his hockey card. He didn’t take the glamorous road to the NHL, and he will most likely never have the star appeal of a Jonathan Toews or Patrick Kane, but he didn’t make it to the show lighting lamps, instead it was his hard work and leadership that got him to the top level.
“I’m not going to be the big goal scorer or the guy that is talked and written about a whole lot,” Jake said. “But I will do whatever I have to do to fill the role that is needed with the Blackhawks, and I am okay with not getting the accolades and being a role player.”
Dowell never notched more than 23 points in an AHL season with the Rockford Ice Hogs and rarely, if ever, played above the third line. It was this exact reason that put him on the penalty kill during his first NHL game on Nov. 25, 2007, and it was this moment that is one of Jake’s best hockey memories.
“To score a shorthanded goal in my NHL debut in Calgary was awesome,” he said. “You dream of playing in the NHL as a little kid, and to finally get to the highest level of professional hockey, and score a shorthanded goal, it was unbelievable.”
It was a challenge for Dowell to make it to Chicago. Spending three grueling seasons in the AHL, and never knowing when you are going to get “that call” takes its toll on a player. But Dowell was persistent, and continued to show the Blackhawks that they should take a chance on him.
“Those are the guys that you need around; they are the other pieces of the puzzle that make up championship teams,” said assistant coach Mike Haviland in January 13 interview with ChicagoBlackhawks.com. “And Dowell falls in that category. He’s been a captain; he’s been a leader. I remember him back at prospects camp when he was still at Wisconsin, and I loved him then. He’s a character guy that you want on your team, and his teammates love him. And you understand why.”
A middle-class upbringing in Eau Claire, and a father who was a former Division III football player, Dowell always knew he wanted to make it to the next level. He just didn’t know it would be at hockey.
“I didn’t really want to play hockey, but my dad wouldn’t let me quit,” he said. “I kept working at it and my dad kept pushing me to get better and once I finally saw some progression in my ability, I just fell in love with the game.”
Dowell is used to facing the toughest competitors on the ice, but it’s the fight off the ice that will determine the rest of his life. He will either face a death sentence or just skate on. But the test is something Dowell will not soon face.
“I think there's a huge amount of social pressure on people to get tested,” said neuropsychologist Nancy Wexler, in an interview.
Wexler says genetic testing for incurable diseases is a double-edged sword. Our culture values knowledge, not ignorance, so not wanting to know is often criticized, she said.
“To know the disease is genetic is very scary,” Vicki Dowell, Jake’s mother said. “But we support him not getting tested, he feels good about what he is doing, and right now having his dad around to be able to share in his life is what is important to Jake.”
Wisconsin coach Mike Eaves, who has known Dowell since he joined the U.S. program, said it is these challenges that make a person who they are.
“In life, when you’re given challenges, you can either turn it into a positive, or it can break you down,” Eaves said. “Jake has persevered. Jake has climbed some tough walls to reach his goals.”
Jake’s reasoning for not being tested, is simple. Nothing will affect his career on the ice.
“Nothing is going to affect me in my career,” he said. “Right now, I’m keeping up on all the research and trying to raise money for research and progress towards a cure. But until my fiancée, Carly, and I decide to have children I will not get tested — now is not the time.”
This season, Jake, spent time with 5-year-old Griffin Bohan, who had a rare, incurable form of brain cancer and has since died, and said it is pretty eye-opening to see a family with a child in such an extremely tough situation and disease to deal with.
“It’s definitely important to spend time with children and families in need,” Jake said. “I can’t always be home with my family, so to be able to help and spend time with a family here was an awesome experience.”
Vicki said a video of Jake and Griffin’s meeting was e-mailed to her and John, and they were overwhelmed and so proud of their son.
“After Jake spent the day with Griffin, and John saw the video he said, ‘If I die today, I’ll die a happy man. I couldn’t be any prouder of my son,’” she said.
Jake said it is difficult being away from his family knowing that his dad and brother are suffering. He called his mom an “angel” for taking care of and keeping the family going, but he has never considered hanging up his skates and walking away from the game.
“It’s tough to know that I am here living my dream, while my family is back home struggling,” he said.
This is the circumstance that Dowell faces everyday, and has said it isn’t easy. But the reality is it is something he has to deal with. For now he is controlling what he can and skating on.
“I am scared everyday,” he said. “But the fact that my dad is here and able to see this and experience this with me makes it all okay. My dad gets to see me play, and that brings him so much joy and excitement, and that makes the struggles worth it.”