2B — February 18, 2019
SportsMonday
The Michigan Daily — michigandaily.com
Each Friday, Declan Mitchell
goes to Riley’s Children’s Hospi-
tal in Indianapolis.
If you went there looking for
him, he would be the one dressed
head-to-toe in sports attire, as he
always is: jersey, socks, the whole
works. Sometimes it’s Michigan
gear. Sometimes it’s a LeBron
James day. Sometimes it’s the
Indiana Pacers.
Declan’s mother, Sarah, says he
likes to show off his uniform to
the nurses.
And then Declan, just 11 years
old, sits in a chair for four hours
and gets a blood infusion. Once a
week. Every week.
Declan has Hunter Syndrome.
It’s a rare, genetic disease that
only affects males, and it means
that he is missing a particular
enzyme that is crucial to cellular
repair. Fewer than 500 boys in the
country are affected by the condi-
tion.
Hunter Syndrome is degen-
erative, and there is no cure.
Declan can still walk and run and
climb stairs, but eventually, that
will change. He is cognitively
impaired — Sarah estimates he
has the intellectual ability of a
three-year-old — so his speaking
ability is limited, though he is able
to communicate what he wants or
needs. That, too, will cease even-
tually.
The life expectancy for Hunter
Syndrome used to be just 15 years.
Thanks to these blood infusions,
which replace the enzyme Declan
is missing, that number could be
doubled.
“Honestly, he really loves going
(to the hospital) so much, because
it’s a part of his life,” Sarah told
me over the phone two weeks
ago. “He doesn’t think anything
different, and on Fridays, we go
there.”
So every Friday, Declan sits. He
eats snacks and watches movies
to pass the time. He loves Michi-
gan football, since his grandma
graduated from the University
and his mom attended for a year,
so his favorite thing to watch is a
Michigan football DVD.
“We actually have to keep
replacing (it). Thank God it’s on
Amazon,” Sarah joked. “It’s like
one of his favorite movies, and it’s
so worn out because we watch it
all the time.”
But that’s Declan. A neighbor
described him as a creature of
habit. He watches sports habitu-
ally. He plays basketball habitu-
ally. He wears jerseys habitually.
These things make him tick.
More importantly, they allow him
to live as normally as he can.
Declan was born a healthy
baby.
It wasn’t until he turned three
that Declan was diagnosed with
Hunter Syndrome, and even then
it wasn’t a simple thing to diag-
nose.
Declan’s pediatrician didn’t
suspect
anything.
His
occu-
pational therapist thought his
breathing was off, but Sarah says
she wrote it off as allergies and
asthma. He had some ear infec-
tions and respiratory issues, but
again, on its own, those traits
didn’t immediately jump out as a
sign that something was wrong,
especially for something as rare
as Hunter Syndrome to be sus-
pected.
It took an occupational thera-
pist and a speech therapist who
recognized some warning signs
to push Sarah and her husband,
Tim, to bring Declan to a special-
ist. It was that genetic doctor who
finally connected the dots.
“When we got the diagno-
sis, we thought, this cannot be,”
Sarah said. “There is no way this
could be this severe. Because he
was talking, and he was happy.
Granted, he was a little bit sore
and some things, but we didn’t
know.”
Sarah and Tim started googling
Hunter Syndrome, and they saw
pictures of other boys with the
condition.
“We were like, ‘Oh my God,
they all look like him,’ ” Sarah
said.
From there, the Mitchells went
the only way they could: onward.
Sarah stumbled onto some blogs
made by mothers of other boys
with Hunter Syndrome, and she
reached out to them, joining a
supportive community of people
going through the same thing.
Sarah says new families often
have a lot of questions early on,
and it’s clear she knows from
experience.
The Mitchells enrolled Declan
in their local public school in
Westfield, Ind., where he has
learned in a modified classroom
since he was in preschool. He has
an aide, Andrew, who spends each
day with Declan and helps facili-
tate his day.
The goal, in the end, is to make
Declan’s life as normal as possible,
both in school and out. For some-
one like him, that means keeping
most things in his life consistent
and familiar while integrating
any new things — like curricu-
lum or new relationships — slowly
around him.
So when Declan moved to mid-
dle school, where he takes classes
now, he spent the prior summer
getting familiar with his new
teacher, Maureen Craver.
“We just did a lot of really fun
stuff just to get him excited to be
in the new classroom with me and
in a new school,” Craver said. “He
loves basketball, so we played a
lot of basketball and a lot of fun
games. So I got to kind of know
him that way and know what he
liked and what he didn’t like.”
Craver had never heard of
Hunter Syndrome before meeting
Declan. Beyond the summer spent
with Declan, she met with Tim,
Sarah and Declan’s last teacher, to
get familiar with the intricacies of
Declan and Hunter Syndrome.
But optimizing Declan’s expe-
rience is a group effort. The
principal, assistant principals,
secretaries, teachers and even the
other students play a part in mak-
ing Declan feel as comfortable as
possible.
And, believe it or not, sports
come in here too.
“I think he uses it as a way to
connect with other people,” Crav-
er said. “So he wears some sort of
— usually an NBA team — shirt or
jersey every day. You know, he’ll,
if he’s maybe a little shy around
someone or if we have new peer
students come in, he’ll kind of
look down at his shirt all coy and
use it as a talking point.
“… All the administration and
teachers and staff here know that
about Declan, and so if our gym
teacher sees him in the hallway,
she’ll say, ‘Oh, Declan, I love your
Heat shirt today!’ to start a con-
versation. Or sometimes it’s other
boys in the hallway with different
sports shirts on, and he’ll go up to
them and say, ‘Oh, Pacers shirt.’
So he uses it as definitely a way to
connect with people.”
At home, things have changed
since Declan was diagnosed.
Sarah used to work on the
wealth management team at
Merrill Lynch. Declan began to
have some struggles in daycare,
though. He was sick a lot, and
because of a lack of awareness
that accompanies Hunter Syn-
drome, he would push kids over
and become irritated.
So Sarah and Tim decided
Sarah should become a stay-at-
home mom.
“It wasn’t a decision I would
have normally made, but it was an
automatic decision, like, I would
just stay home with him,” Sarah
said. “So for a few years, we just
lived on Tim’s salary, and that was
very unplanned, so things were a
little tight.
“But that was just what had to
be done.”
Sarah has since picked up a
part-time retail job, while Tim
works as a vertical sales manager
for a global electrics company.
In a way, though, taking care
of Declan is a full-time job, and
Sarah would be the first person to
tell you that she can’t do it alone.
Her parents have moved closer to
home to help out, and the commu-
nity around her helps too.
None of this is to say that any-
body is complaining, because
whatever Declan requires in
attention he gives back in happi-
ness.
Declan likes to take walks to
neighbors’ houses to play basket-
ball. Oakley says everyone is just
happy Declan can play.
He has made friends with the
other children in the neighbor-
hood, including Oakley’s son,
Dylan, who passes down basket-
ball jerseys for Declan to wear.
“I know that, like, he’s kind of
a handful,” Sarah said. “He’s just
kind of a busy kid with a short
attention span, and like a low
vocabulary. So he can be kind of
a handful, but I know the people
who know us, like, he’s so happy.
And he brings a lot of people so
much joy.
The worst part of Hunter Syn-
drome is the degenerative part.
Declan has some problems
climbing stairs. At some point, the
Mitchells will need to move into a
one-level home.
Special education students are
allowed to attend school until
they are 22. For most students,
Craver says the goal is to move
students into a “supported home
environment,” and even get them
a job. For Declan, though, that
may not be possible, depending on
how healthy he can stay.
“I know people who have
already
been
through
that
because I have friends in the com-
munity,” Sarah said. “So I kind
of know what that journey looks
like, because of other kids that are
the same age that are more severe,
a little further ahead and a couple
years older. But it’s just, kind of,
nothing prepares you for it, even if
you know what’s coming. It’s just
kind of crappy.”
What is here now, though, is
something that Declan, Sarah,
Tim and everyone who knows
them is thankful for.
He can still talk — things like
‘mom’ and ‘dad’ and ‘I want that
movie.’ That is not a small thing.
“It sounds weird, but we’re
very grateful for that,” Sarah said.
And more importantly, Declan
still makes an impact on those
around him. When the Mitchells
take a trip to the grocery store,
Sarah says they always run into
people who know Declan.
Declan can still watch Michi-
gan football and the NBA. He is
still active, still shooting hoops at
neighboring houses.
Something about Hunter Syn-
drome is that Declan isn’t capable
of understanding that he is any
different than other kids. The
people around him see to it that
his life is improved as much as
possible.
The kicker is that, along the
way, Declan has done the same in
return.
Money is being raised to fund
research for gene therapy, which is
thought to be a potential cure for
Hunter Syndrome, at projectalive.
org. There is also a gofundme page at
www.gofundme.com/projectalive. As
of the writing of this article, the page
has raised $2,268,810 with a goal of
reaching $2.5 million.
SportsMonday Column: Declan Mitchell and the joy he brings
Michigan sweeps Binghamton
Going into the eighth inning
on Saturday, the No. 17 Michigan
baseball team (3-0 overall) was
tied 4-4 with Binghamton (0-3).
It was the second game in a three-
game series, with the Wolverines
notching a 10-0 victory in the first
game of the series.
Saturday,
though,
was
a
different story. Michigan went
down 4-2 in the third inning
after senior third baseman Blake
Nelson’s three errors propelled
Binghamton to score three runs.
“We had a tough defensive
day on Saturday, but that’s a
fluke,” said Michigan coach Erik
Bakich. “It’s just a hiccup. I don’t
anticipate very many games like
that, but those days happen and
we just have to move on.”
Clawing its way back to even
the score against the Bearcats
with a run in both the fourth
and
fifth
innings,
Michigan
was looking to find momentum.
Finding it in the bottom of the
eighth, Nelson singled to left field
and advanced to third on two
wild pitches, allowing sophomore
shortstop Jack Blomgren’s single
to knock him in for the go-ahead
run.
With the nail-biter on Saturday
done, the Wolverines came to play
on Sunday. Holding the Bearcats
to two runs, they broke out with
a six-run eighth inning to win the
game 12-2.
“I and my coaching staff like
the way we put the exclamation
mark on the weekend with the
six-run eighth inning to really
extend the lead,” Bakich said.
“The game was much more in
question than 12-2, but it took a
six-run burst there in the eighth
to really separate.”
All three of the weekend games
were won on the back of the
pitching, with junior right-hander
Tommy Henry throwing seven
shutout innings and redshirt
right-hander
freshman
Isaiah
Paige notching two of his own.
Saturday saw junior right-
hander Karl Kauffmann pitch
10 strikeouts, only allowing one
earned run. Freshman Willy
Weiss finished the game with a
clutch save, striking out the side
after allowing a leadoff single.
Sunday was more of the same,
as sophomore right-hander Jeff
Criswell got the start, allowing
only one run in five innings.
A team of relievers showed
the game out, headlined by
sophomore left-hander Angelo
Smith — who threw two innings
with four strikeouts and one
earned run, striking out two and
getting a groundout after coming
on with the bases loaded in the
sixth inning.
Pitching, though, wasn’t the
only thing going for Michigan.
Holding a batting average of .315,
the offense held its own. Sunday
brought two triples, by Blomgren
and redshirt senior Miles Lewis,
and a homerun from sophomore
catcher Joe Donovan.
“As a coaching staff we were
really impressed with the balance
of our offense with multiple
threats throughout our lineup,
one through nine,” Bakich said.
“A combination of both speed and
power. It’s just a tough lineup to
get through.”
One offensive star of the
weekend has to be Blomgren,
who had five runs batted in —
including the winning one on
Saturday.
“He hit a huge triple today that
really separated the game and
what it means is that we’re really
deep,” Bakich said. “He may be
in the nine-hole in our team, but
he might be in the two-hole or
leadoff spot on another team.”
All of the Wolverines’ offensive
production came without junior
outfielder
Dominic
Clementi,
who had a team high .368 batting
average last year and was out with
an abdominal sprain. Clementi is
questionable for next weekend’s
series against The Citadel.
Even so, this opening series
could not have gone much better
for Michigan, who has come out
of the gates as fast as it could have
hoped.
Pitching leads ‘M’ past Bearcats
In the top of the sixth inning
on
Sunday,
Angelo
Smith
walked into the worst possible
situation for a pitcher: bases
loaded, nobody out.
At
least
one
run
for
Binghamton (0-3) seemed all
but certain to everyone but
the sophomore left-hander.
Smith struck out his first two
batters on six pitches and got
his third batter to ground out
on the next pitch to escape the
jam.
The
No.
17
Michigan
baseball
team’s
pitchers
shut down the Bearcats this
weekend in its season-opening
series. Five of this weekend’s
hurlers are still holding onto
a perfect 0.00 earned run
average. The Wolverines kept
the Binghamton confused all
weekend, holding it to six runs
on the series. Michigan swept
all three games, winning 10-0
on Friday, 5-4 on Saturday and
12-2 on Sunday.
“Our three starters, Tommy
Henry, Karl Kauffman and
Jeff Criswell all gave us very
solid outings and did a really
good job of minimizing free
passes,” said Michigan coach
Erik Bakich. “All of them did
a great job of
attacking
the
strike zone.”
One
particularly
strong
performance
came
from
Tommy
Henry,
who
started
the
Wolverines’
first game of
2019 on Friday. The junior
left-hander held Binghamton
to six hits and no runs over
a dominant six innings of
work, striking out nine in the
process.
Michigan also saw strong
performances
in
shorter-
inning
stretches
from
its
bullpen. Redshirt freshman
right-hander
Isaiah
Paige
allowed only a single hit and
no runs over three innings
of work out of the bullpen
on Friday. Freshman right-
hander
Willie
Weiss
earned
his first career
save
in
his
first
collegiate
outing for the
Wolverines.
He struck out
the side to end
Saturday’s
nail-biting
contest
and
seal Michigan’s
come-from-behind victory.
“Striking out the side in his
one inning on Saturday, Willie
really showed some electric
stuff,” Bakich said. “It was
really great to see.”
Michigan’s
pitching
was
so dominant that many of
the hurlers got little or no
work over the course of the
weekend. Some of them will
have to pitch in a scrimmage
this week to reach their target
number of innings pitched and
stay on pace for the season-
long goals set for them by the
coaching staff, according to
Bakich.
Though
fewer
of
this
year’s pitchers have in-game
experience on the season so
far,
the
Wolverines’
arms
will be plenty rested for next
weekend as the team heads
down to Charleston, S.C. to
face the Citadel. Many of the
pitchers also have college
experience behind them from
previous seasons, so with
almost a week’s rest before
their next game, the pitching
staff will look to put out
another weekend of shutout
work.
“We certainly feel great
about our veteran pitching
staff,” Bakich said. “That they
were able to give us three
quality starts on the weekend
– it was great to see.”
ABBY SNYDER
Daily Sports Writer
KENT SCHWARTZ
Daily Sports Writer
FILE PHOTO/Daily
Sophomore left-hander Angelo Smith escaped a bases loaded, nobody out situation in the top of the sixth inning during Michigan’s 12-2 win on Sunday.
We certainly
feel great about
our veteran
pitching staff.
MIKE PERSAK
Daily Sports Writer
COURTESY OF SARAH MITCHELL
Declan Mitchell was diagnosed with Hunter Syndrome at age three.
Read the full story online at
MichiganDaily.com