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JAKE DOWELL

22 | MAY 2, 2011 THN.mobi

SOMETIME SOON JAKE DOWELL WILL LEARN IF


HE HAS THE DEADLY DISEASE THAT HAS CRIPPLED HIS FAMILY.
ITS A HUMBLING, PRECARIOUS EXISTENCE

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THE NASTY SCAR OVER


Jake Dowells left eye was,
like almost all the road maps
NHL players wear on their faces,
well-earned. It required 40 stitches
to close, including the ones under the
surface of the skin. The gash itself went
right down to the skull. He missed three shifts
while the medical staff worked to stem the blood
flow and reattach the flap of skin.
As the Chicago Blackhawks were furiously chasing a
playoff spot in late March, Dowell found himself caught up in a
battle along the boards with Jarkko Ruutu of the Anaheim Ducks.
Ruutu grabbed Dowell from behind in a bear hug and, as the two
players fell forward, Dowell recalls the feeling of powerlessness in the
split second prior to him slamming his head against the ice. Ruutu had been
holding both his opponents arms, preventing Dowell from breaking his fall.
For that brief moment in time, Jake Dowell experienced the kind uncertainty,
fear and sheer helplessness his father, John, and older brother, Lucas, face almost
every day. There are some nights when all 270 pounds of John Dowell falls out of his lift
chair and hes as helpless as his son was when he was tackled by Ruutu.
There are just as many days when the voices in Lucas Dowells head simply wont go away
no matter how many doses of medication he takes.
And there are the days when Jake Dowell has what he describes as pity parties. Sometimes hell
walk around the suburbs of Chicago for two hours with his dog, resenting the fact he was cheated out of
normal relationships with his father and brother. Then there are the days when Dowell worries about his
own mortality and the fate of his children, should he have any.
As an elite athlete, Dowell often experiences muscle twitches, particularly after a long workout. For Dowell, an
uncontrollable and involuntary twitch of the finger or a quadriceps muscle while sitting on the couch could be nothing more than the product of an overworked body. Or it could represent the presence of a rare genetic disease that will
rob him of his body and mind before it slowly kills him.
THN.com MAY 2, 2011 | 23

It used to scare the heck out of me because it would happen all the time, Dowell said. I would just think to myself, Im
doomed.
Its an awful lot of weight to carry around for a 26-year-old
NHL rookie, one who is finally finding his way in the best league
in the world. After graduating from the University of Wisconsin,
Dowell slugged it out for three years in the minors and sometimes felt as though he was buried there for good. But the combination of his perseverance and the Blackhawks cap constraints
finally gave him the chance to fill a role on the fourth line and kill
penalties, both of which he has embraced with evangelical zeal.
Some nights he plays 15 minutes, some five. On a team thats
not known for its toughness, he leads the Hawks with nine fighting majors this season. Thats one more than enforcer John Scott,
to whom Dowell surrenders eight inches and more than 55
pounds. Dowell has played much of this season with a broken
bone in his ankle and a sprained meniscus in his knee, but those
are minor annoyances when you consider what he has endured.
To see and speak with him, you wouldnt know the trials Dowell has encountered on his path to the NHL. After all, its not as
though its a topic of regular conversation with his teammates,
some of whom know almost nothing about his personal and family history.
But for the better part of the past decade, Dowell has lived
with the specter of Huntingtons disease, a genetic disorder in
which nerve cells in the brain are irreparably damaged, causing various parts of the brain to deteriorate. Once the disease
sets in, a persons abilities to walk, think and reason are slowly
stripped away as the body and mind continue to decline. Finally,
it gets to the point where the patient is effectively paralyzed and
must be fed through a tube. It can last 10 to 20 years before the
patient eventually dies, usually of an infection or starvation or
sometimes suicide. Some describe it as the worst of Lou Gehrigs,
Alzheimers and Parkinsons.
No disease is better than the next, Dowell said, but this one
is as bad as it gets.
24 | MAY 2, 2011 THN.mobi

I ALWAYS
KIND OF EXPECT
THE WORST
AND HOPE
FOR THE BEST

It has already taken hold of his 55-year-old father, who can no


longer speak clearly and relies on 24-hour care, most of it from his
wife and Jakes mother, Vicki. The disease almost always begins
to manifest itself somewhere between the ages of 35 and 55, but
there can also be juvenile-onset Huntingtons, which brought on
bipolar schizophrenia in his 28-year-old brother and confined the
young man to a group home near his parents in Eau Claire, Wisc.
On top of all that, Jake Dowell could be carrying the Huntingtons gene around with him right now.
Those whose parents have the disease have a 50 percent chance
of developing it themselves, but Dowell has yet to be tested. With
a marriage to fiancee Carly Sturges on the horizon in the summer
of 2012 and children sometime after that, Dowell is well aware
the time is nigh when he must find out the reality one way or
the other. If a person is carrying the gene, there is a 100 percent
chance he or she will ultimately get the disease.
Vicki Dowell says she knows in her heart Jake isnt carrying
the Huntingtons gene, which actually doesnt provide a whole
lot of comfort to her son, even when hes feeling optimistic.
She can be as sure as she wants, Dowell said, but that doesnt
make any difference. I always kind of expect the worst and hope
for the best.
The way Dowell sees it, had the disease been juvenile-onset,
he would have been suffering with it by now. And if it surfaces at
the stage of life it does for the vast majority of those who carry
the gene, that still leaves him at least 10 years in which to enjoy
life and carve out a lucrative and rewarding NHL career. And even
though there is no cure, nor is there one on the horizon, modern
medicine and stem cell technology can move very quickly.
On one hand, many people in Dowells shoes would want to
know their fate. But others who are at risk of carrying the gene
dont want to know, arguing there would be little motivation to
even get out of bed in the morning knowing they would ultimately be rendered an invalid. But after telling his mother repeatedly
as a teenager, that he wouldnt have a test tube baby, Dowell
has decided he will find out before he and Carly have children.

FRANCOIS LAPLANTE/FREESTYLE PHOTOGRAPHY

JAKE DOWELL

JAKE DOWELL

For more on Jake Dowell,


go to thn.com/dowell

YOU CANT PUT YOURSELF IN


SOMEBODYS SHOES, YOU CAN
JUST BE THERE FOR THEM

The technology now exists where even if a man is carrying the


gene, it can be weeded out from the sperm for the purposes of in
vitro fertilization.
As you can see, Dowells situation isnt exactly the grist for light
dressing room banter. His teammates know about his situation
peripherally, but there are few people to whom he really opens
up about it. One of them is Los Angeles Kings defenseman Davis
Drewiske, Dowells best friend and teammate from the 2005-06
Wisconsin Badgers team that won a national championship and
graduated seven NHL regulars. Another is Blackhawks veteran
backup Marty Turco, who freely admits hes totally unqualified
to render advice on what Dowell should do.
You cant put yourself in somebodys shoes, you can just be
there for them, Turco said. I dont think I can intelligently begin
to guess. Its got to hit you right in the face and it has hit him right
in the face.
Growing up in Eau Claire, Dowell enjoyed a typical midwestern childhood full of sports. John, a former Division III lineman
for the University of Wisconsin-Eau Claire football team, was the
kind of father who coached his sons in every sport and was intensely involved. Part of the reason was his own father battled
alcoholism and depression until committing suicide at 35. Johns
grandmother had a severe nervous condition that went undiagnosed and untreated. It was only after Johns Huntingtons diagnosis in 2002 that the family connected the genetic dots.
John co-owned a collections agency and Vicki was a special education teacher. Jake worshipped his older brother and was motivated in hockey to be as good as Lucas was. The two were best
friends who would do typical brother things like horse around
in the water at the cottage and endlessly recite lines from their
favorite movies.
When Lucas hit 14, everything changed for the Dowells. He
started leaving school unannounced
and bolting from his bedroom
window at night. Right around
the same time, John transformed from being an optimistic and hard-working
provider to an ill-tempered,
angry and brooding man.
Because Vicki had to call the
police when Lucas disappeared,
he became entangled in the penal system and was branded a
juvenile delinquent.
Vicki suspected mental illness, which Eau
Claires district attorney whose
son once played
hockey with

26 | MAY 2, 2011 THN.mobi

THE DOWELL FAMILY VICKI, JAKE, LUCAS AND JOHN HAVE


GONE THROUGH A LOT, BUT WILL ADD ANOTHER MEMBER
SOON IN JAKES FIANCEE, CARLY.

Jake and Lucas told a judge he was faking. When Lucas was 17,
he was diagnosed as a bipolar schizophrenic, but it wasnt until
six agonizing years later that it was tied to the juvenile onset of
Huntingtons disease. While still functional, Lucas often hears
voices and mumbles to himself almost constantly. His IQ is now
in the high 70s and his capacity to learn anything new has essentially been wiped out.
Lucas problems were exacerbated by the fact John, for reasons nobody could figure out, was going through drastic changes
in his own personality. He would threaten to divorce Vicki over
the most insignificant things and generally walked around with a
scowl on his face. One day he decided arbitrarily that he could no
longer work with his business partner and sold out his half of the
business he had worked 20 years to build. He tried several other
ventures, but essentially lost most of his money.
There was a time when John was so aggressive and moody
that Vicki told Jake she was going to leave her husband, but Jake
pleaded with his mother to stay because of all the upheaval in his
life. Three months later, John was diagnosed with Huntingtons.
Here I am pulling back in my relationship with (John) because
I cant cope anymore, Vicki said, and then I find out he has this
illness and I have to throw myself back into what I need to be for
him. It was really hard.

ACTION: BILL SMITH/NHLI VIA GETTY IMAGES; OTHERS COURTESY OF DOWELL FAMILY

MARTY TURCO

JAKE DOWELL

THERE ARE
TIMES WHEN
IM ON TOP OF
THE WORLD
WITH HOCKEY
AND I HAVE
TIMES WHERE
I THINK IT
CANT GET
WORSE WITH
MY FAMILY
28 | MAY 2, 2011 THN.mobi

THE LUXURIES OF THE NHL CANNOT KEEP DOWELLS


MIND OFF THE HARDSHIPS OF HIS FAMILY IN WISCONSIN.

ones who understand what hes saying and can repeat it back to
you. The fact he can no longer use the toilet without help and has
to have a baby monitor in his bedroom so Vicki can hear if he falls
means she is essentially caring for a 55-year-old infant.
John will ultimately die of this disease, but at the moment
his heart, kidneys, lungs and liver are in perfect working order.
Although he is beginning to have trouble swallowing, he could
conceivably live up to another 10 or 15 years. He will have to be
institutionalized at some point, but Vicki, who teaches part-time
at Wisconsin-Eau Claire, wants to keep her husband at home as
long as shes able to cope with the physical and mental demands
of caring for him. Many with Huntingtons eschew a feeding tube
and die; both Jake and Vicki are unsure what John will decide.
I hope that when he gets to the point where he cant eat food
anymore that hes deteriorated enough to not want to (have a
feeding tube), Vicki said. I dont want that for John, but if he can
talk to me and tell me that he cant eat, but still wants to be alive,
I cant tell him he cant do it.
All of it makes for a perilous future for everyone involved in
the Dowell family, including Jakes fiancee. One of Jakes biggest
fears through college was how he would ever meet someone who
would be on board in dealing with all of this and not be scared
off. After all, Vicki Dowell never signed up for any of this, but
Jakes potential life partner would be fully aware of the potential
and real problems that come with the disease.
Carly and Jake met through a mutual friend during Dowells
first pro year with the Rockford IceHogs of the American League
and have been together ever since. She has already decided regardless of what the result of the Huntingtons test ultimately is,
Jake is the person with whom she wants to spend the rest of her
life. Jake was upfront about the situation early in their relationship and Carly realized early it would be something they would
overcome together.

FRANCOIS LAPLANTE/FREESTYLE PHOTOGRAPHY

Right around that time, Jake left to join the U.S national team
development program in Ann Arbor, Mich., and hasnt lived at
home on a full-time basis since. Being shielded from the day-today struggles of Huntingtons has probably helped him to focus
on his hockey career, but the guilt of it all weighs heavily on him
at times. The same night Jake was kicking back in a boutique
hotel in Montreal preparing
to play the Canadiens, Vicki
was back in Eau Claire feeding her husband, giving him
his meds and taking him to
the bathroom.
I think about that quite a
bit actually, Jake said. Thats
been one of the hardest things
the past couple of years. There
are times when Im on top of
the world with hockey and
I have times where I think it
cant get worse with my family and theyre absolute polar
opposites. I try to make sure I
stay in the middle as much as
I can.
Until Jake went home to
visit at Christmas, he was
strong enough and his father
was capable enough for Jake
to take him to the bathroom
without his father going
from the lift chair to the wheelchair to the toilet. But now John
has almost zero coordination and strength. Most days are spent
sleeping and eating, with the exception of the nights the Blackhawks play, nights for which John lives. Trying to carry on a conversation with John if you dont already know him is impossible.
Its like speaking to a toddler whose parents seem to be the only

JOEL AUERBACH/GETTY IMAGES

JAKE DOWELL
Bowman, who was
It didnt take me long
instrumental in drafting
to realize I wanted to be
and developing Dowell,
with him, Carly said.
knows all about healthRight from the beginrelated uncertainties. In
ning, I realized he was
2007, at the age of 33,
a special person and
he was diagnosed with
I knew I wanted to be
Hodgkins lymphoma
with him every second
and has since battled
I could. I was worried I
the illness into remismight have scared him,
sion on two occasions.
actually.
Last season, the father
On the ice, things
of Hawks right winger
couldnt be going any
Troy Brouwer suffered
better for Jake Dowell.
a brain aneurysm just
Blackhawks GM Stan
prior to the teams
Bowman made numerStanley Cup run.
ous trips to Rockford
I think I can idenover the past couple
tify with the fact that
of years to convince
youve got to deal with
Dowell he was still in
it, but you cant let it afthe Blackhawks plans.
fect your job, Bowman
Dowell was named capsaid. I never did and
tain of the farm team a
DOWELLS TEAMMATES LIKE AND RESPECT THE VERSATILE FORWARD
Jake feels the same way.
year ago and has made
BECAUSE HE GOES TO THE PLACES ON THE ICE MANY OTHERS AVOID.
You can expend a lot of
himself an invaluable
energy worrying about things you ultimately have no control
role player for the big squad this season. Its an enormous year for
over and thats a lot of wasted energy. You take your treatments
him, though. Hes finally earning NHL money, albeit just $25,000
and stop feeling sorry for yourself and get on with it.
more than the league minimum of $500,000. Hes due to become
As optimistic as Vicki is that her son will live a long and full life,
a restricted free agent this summer and has set himself up for a
she has contemplated how she would deal with a positive test.
longer-term deal at better money. Bowman has expressed a deIt would devastate me, she said, her voice cracking. It would
sire to keep him in the organization.
be the last straw. It would be taking away the one thing in my life
He is well-liked and respected by his teammates, largely bethat I still have left.
cause he does a lot of dirty work for the Hawks. Turco, in fact,
John will continue to look forward to the days when his son
said hes one of those versatile, hard-working players that teams
plays with Chicago and he can watch the games from his living
wonder how they can live without. Chicago has not pressured
room recliner. There are plans for the Blackhawks to sponsor a
Dowell to get tested, nor did Bowman say his uncertain longHuntingtons fundraiser next season and everyone is hoping John
term future would ever affect the organizations plans for him.
will be able to attend the game. If he does, it will almost certainly
One thing Bowman is most impressed about with Dowell is
be the last time he ever watches his son play live. These days Luhow well he has been able to put everything aside to concentrate
cas is clumsy and has trouble with manual dexterity, but it will
on playing hockey. He said that while Dowell had his moments
get worse as the years pass. Then will come Jakes life-changing
of doubt playing in the minors, because he was doing everything
decision to get tested, likely within the next 18 months.
asked of him and still not getting called up, he never complained
Im pretty humble, anyway, Dowell said. But this has all been
about his situation and, instead of becoming sour, worked his
a pretty humbling experience.
way up to being captain of the team.

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THN.com MAY 2, 2011 | 29