NEVER SAY QUIT
Karla Hurdle proves
that
love can conquer all
Written by ELLEN GRAY
Photography by KIT WILLIAMS
For Karla Hurdle, it would seem that the end of
every day is a gift, the beginning a mystery. This
strong woman faces challenges that most of us
cannot imagine. She stands in the glare of the public
spotlight with her husband, Colorado Rockies manager
Clint Hurdle, and she faces an intensely private struggle as
she raises her adorable children, one of whom is afflicted with
a daunting illness. Through it all, she must stand tall, keep
smiling, keep moving. Amazingly, she does.
The Hurdles’ daughter, Madison, was born with Prader-Willi Syndrome, a chromosomal disorder that affects one in
12,000 babies. Little was known about the disease until the
past few decades, and even today it may be misdiagnosed or
left untreated.
“A common misconception is that babies born with this
syndrome are preemies at birth. Madison was only two
weeks premature, and she was a sleepy baby, which we did
not perceive as unusual. But we were lucky. We had a doctor
who thought something just wasn’t clicking, and he determined
that she had Prader-Willi,” Hurdle says.
Her voice drops a bit as she recalls the internal struggle to
accept the fact that her precious child was born with a birth
defect. “When was the last time you heard about a cure for
any type of birth defect? So our whole focus is on making the
quality of these kids’ lives better, and I truly believe that kids
born with the defect in this generation have it so much better
than just a few years ago,” she says.
Hurdle’s mission, as she sees it, is to
educate as many families as possible
about the disorder, so that others may
finally recognize how prevalent and serious
it is: “For so many years, many of the
kids born with Prader-Willi were mistakenly
diagnosed as having Down Syndrome,
because the symptoms are similar,” she
says. “Today, there are many kids, now in
their early 30s, who have just been diagnosed
correctly. These kids always struggled
with their weight, were the slowest
in their class, and had all the symptoms of
Prader-Willi. Yet the disease was only really
discovered 37 years ago, so there is not
a great deal of data that has historically
been available to help physicians.”
Hurdle and her husband now work
closely with the Prader-Willi Syndrome
Association, the national headquarters
tasked with spreading information and
boosting awareness of the illness. Their
efforts to educate are significantly
enhanced by their public exposure, a platform
Hurdle cherishes, although her husband
has typically been the public persona
in most media coverage. Hurdle
says the couple’s determination to speak
publicly about Madison’s struggles has
brought understanding and relief for many
families. “It’s not at all uncommon for the
national headquarters to get a call from a
parent who read an article that discussed
our struggle and who then called their
pediatrician, who confirmed their child
has the syndrome,” she says.
Her passion for her kids and her family
is nothing short of breathtaking. Perhaps
it’s because she’s married to the man
who helped propel the Colorado Rockies
to the World Series just one year ago.
Perhaps her daughter’s illness brought
out some iron will to make sure others
could enjoy the love, understanding and
quality of life she is determined to provide
her child. Perhaps she just doesn’t want to see one more baby
fall through the cracks, wrongly diagnosed, and destined to lead
a life that could be ever so much sweeter.
“This whole experience has been a process,” she admits. “First, we had a hard time becoming pregnant and went
through all the hoops. When we finally became pregnant and
had the baby, it was not at all what we had envisioned. It was
like we raised our hands and had to go right to the front of the
line, when we didn’t feel it was our turn. But we went through
the grieving process, and we survived it.”
It was those early days that seem to stand out the most for
Hurdle, who thoughtfully recalls the number of times she
would simply look at her husband and say “this really stinks.”
It truly is difficult to imagine the pain of the parent who
understands her child is somehow different and that her life is
not going to be an easy road to travel. Shortly after she gave
birth to Madison, the doctors placed the baby in the newborn
intensive care unit. “It’s not what I signed up for. You leave the hospital and expect to take the baby home with you. Instead,
I’d get to the hospital and remain there all day until around 9
p.m., go home to try to get some sleep and start all over
again,” she recalls. “It was overwhelming. During pregnancy,
everyone tells you it doesn't matter what sex the baby is, as
long as it’s healthy. That’s really all anyone wants,” she sighs.
In addition to learning her infant daughter had a strange
and life-altering affliction, Hurdle was forced to deal with the
daily demands required of the wife of a man at the helm of a
professional sports team. “Clint was given the manager’s job
in April, and Maddie was born in August. Clint was traveling a
lot during my pregnancy, but he was home for the delivery.
Then he had to leave again. I probably began the grieving
process quicker than Clint, because I lived it and saw it every
day. Clint was not there to deal with it as much, which in
some ways made it harder on him. In any type of situation like
this, the only way to get through it is to deal with it one day
at a time. You can’t sit around wondering will she go to the
prom, drive a car, go to college? Our doctor told us early on
that it would be useless to ask those questions. We have to
let Madison tell us her own story in her own time,” she says.
After Madison was diagnosed, Hurdle began reading all the
information that was available on the Internet. Unfortunately,
most of the material was archaic and had little bearing on the new
treatment options and progress that has been made. “It was all
doom and gloom, and many of the kids referred to were living in
homes because their families could not take care of them,” she
says. “But we can do it differently with Madison. We can push
her, encourage and help her. She goes to occupational, physical
and speech therapy. She gets massages and compression on her
joints. She takes medicine to control her eating.”
Such intense dedication to a child must at some point take
its toll on the caregiver. “I really didn’t realize how much it took
out of me until Madison was a little older,” Hurdle admits. “I
would take a break and go to Starbucks or out for a short walk.
I’d be gone for an hour and I’d wonder how I’d spent it. My
mother’s role was to be the nurturer, to take care of the kids. My
family had eight kids, and I see now that my mother got what
was left over. When I take time for myself, it’s hard to feel I’m
not supposed to be doing that. But we all need a break, and it
benefits me as a person, my marriage and my family.”
Hurdle says that illness in any family is bound to impact a
marriage at some level. “When you have children, you are no
longer the center of each other’s focus, and when you have a
sick child, you can multiply that times three,” she says. “Clint
and I have said we would not be as far along in our relationship
were it not for Madison. She has taken us places we
never thought we’d go.”
And it’s not just the Prader-Willi that challenges the couple.
Five years ago, Madison began having epileptic seizures and
had to be put on special medicine to control the attacks. The
first one, she says, occurred while she was shopping with
Madison at The Gap, and her husband was away at a game.
Over the next 30 hours, she had 15 more seizures.
Now seizure-free for three years, Madison must continue
with regular checkups with a neurologist. Then last year,
she was hit with Kawasaki disease, which affects one in
24,000 people. Those who contract it are typically male,
under the age of 9, and of Asian descent. Symptoms are
similar to scarlet fever, including extreme lethargy and a
rash over the entire body. “Antibiotics were not helping,
and we had to quarantine her because we didn’t know
where it originated or what was causing it,” recalls her
mother. But again, the Hurdles got lucky and found a doctor
at Children’s Hospital who made a fast and accurate
diagnosis. Left untreated, Madison would have faced
severe complications in later life, mostly heart-related.
One of the more difficult adjustments Hurdle has had to
make was in giving up her own career, working for a CPA firm. “There are times when I greatly miss the interaction of not
working, the adult conversation and stimulation. But I don’t
miss the April tax season and not being able to see more of
Clint when he’s busy with Spring training. I sometimes feel
like I’ve lost my edge, and I never thought I would not work.
But priorities change, and that’s the way it is,” she says.
Hurdle chooses not to travel with her husband to many of the
games, preferring to keep the kids at home. Between dealing
with the daily rigors of Madison’s life and balancing that with
her active 3-year-old son, Christian, she keeps very busy planning
an annual golf tournament that raises money and awareness
of Prader-Willi Syndrome. The annual tournament is
always a sellout as well as a lot of fun for participants. Clint Hurdle is always on hand to participate as a golfer, and to
encourage players to “beat the manager.” Another hole may
require players to don a catcher’s mask and gear before teeing
off. “If you’re a hard-core scratch golfer, this tournament
may not be for you,” Hurdle says. “It’s all about having fun,
and you’ll have a smile on your face at the end of the day.
“I don’t have Clint’s platform, but this is my niche,” she continues. “My piece of the pie is being able to raise money for the
local and national chapters.” Her efforts are not insignificant. In
the tournament’s first year, $37,000 was raised. Last year, that
number had grown to $94,000.
Hurdle’s newest endeavor is to raise money to open a group
home for Prader-Willi kids so
that they may live independently,
perhaps have jobs,
and, in the end, gain a sense
of their own self-worth. “These kids have so many
issues to deal with, including
respiratory, sleep, weight,
muscle function … some
have even died from it. But
today there is so much education,
so many avenues to learn
from, and our kids are in such
a better place than the ones
before them. The president of
our local [Prader-Willi] chapter
has a daughter in her early
teens who plays piano, soccer,
attends regular school.
She’s a poster child for the disease,
and she’s just a few years older than Madison. So if she
can do that, where can Maddie go?” she asks.
Hurdle’s attitude and optimism are phenomenal. “Don’t
get me wrong. It wasn’t so good in the early days, but it doesn’t
help to sit around and wonder why she isn’t normal. It was
especially hard on Clint, who faced a different kind of struggle
because he was traveling. He went through a time when he
was so depressed, crying in his hotel room and not wanting
to leave the hotel. He would look for a sign, something that
would tell him why we were chosen for this,” she says. “Then at the end of one road trip, the team buses took everyone
back to Coors Field from the airport. It was late at night,
and Clint was in his office going through a stack of mail, and
he found one piece that said, ‘To Clint Hurdle.’ He read the
enclosed letter, and at 2:30 a.m. called me saying, ‘Remember I told you I kept waiting for a sign? I’ve found it.’”
Enclosed in the letter was a brief paragraph, which read, ‘I
know what you are thinking, You need a sign. What better one
could I give than to make this little one whole and new? I
could do it; but I will not. I am the Lord and not a conjuror. I
gave this mite a gift I denied to all of you — eternal innocence.
I have chosen you. You have not chosen me. This little
one is my sign to you. Treasure her!’
“To this day we don’t know who sent it or where it came
from,” Hurdle says. A bit of research found that the passage
originated from a monastery where kids with Down Syndrome
were taught. Today, a framed picture encasing these words
hangs in Madison’s room, a reminder that perhaps she does
serve a purpose greater than even her parents can imagine.
Now 5 years old, Madison is on growth hormones, which
she began taking before she was a year old. Her muscle tone
is slowly getting stronger, and she is able to run and play with
her younger brother. Each day, her parents watch carefully,
looking for the smallest signs of progress that so many others
take for granted:
“Some of our first struggles were to get her to eat, because
the length of time it took was counteracted by the energy she
consumed in the process. She is missing her 15th chromosome
and the protein generated by that chromosome, which tells her
brain she’s full. So she is still hungry, and these kids typically cannot
control what they eat. Their metabolism is so slowed down
they cannot generate the growth hormone that makes kids
stronger. We try to limit her to 800-1,000 calories a day, and the
growth hormone gives her
body what it lacks on its own.”
The Hurdles also have
struggled to understand how
Madison’s behavior is affected
and realize her life runs more
smoothly when she is allowed
to finish a task before moving
on. “This helps in her classroom,
because we can tell the
teacher to prepare her to finish
something. It’s about always
keeping one step ahead,” she
explains. Next year, when
Madison starts kindergarten in
a regular school, the Hurdles
plan to have an aide in the
classroom who can help
Madison adjust.
The Hurdles’ son, although
still a toddler, understands Madison is more limited in her abilities,
but continues to push and encourage her to keep up. “Just
a year ago, she didn’t want to go outside and play in the cul de
sac with all the other kids. A lot of that was because she couldn’t
run. In fact, she did not walk until she was 28 months. It was
so wonderful to see her wanting to run and play with her
peers,” says Hurdle.
Looking back, Hurdle says that Madison’s defect could have
been diagnosed while she was still in the womb through a fish
test, a simple blood test that tests specifically for that chromosome. “In hindsight, Maddie was very low movement in utero,
and she was born breech a couple of weeks early. You look at
that now and realize so many signs were there, but at the time
I never knew anything was wrong or different,” she says.
The decision to have another baby was not taken lightly.
Hurdle’s sister had donated eggs, and Madison had been born
after in-vitro fertilization. The remainder of the donated eggs
were frozen and, once eggs are frozen, they could not be tested. “We were told the risk was less than 1 percent that we
would have another Prader-Willi child. Finally one day Clint
and I looked at each other and said we think we’re ready to
have another child. In a way this was a selfish decision,
because we wanted her to have a sibling who would spur her
on, be her competitor, make her keep up. And he’s such a
compassionate little guy. I know he’s going to be able to look
after her and help her keep going,” says Hurdle.
For the Hurdles, the heartache of a sick child has forged a
strong and profound realization. “In a way, we both feel she’s
not really our child, and we’ve turned it over to God. We may not
agree with what happens, but we stopped asking ‘why?’” she
says. “She’s our little angel without wings, here on earth.”
