By Lori Larsen: Camrose Booster
Aria Gutmann is a high-spirited little six-year-old
whose infectious smile has
a way of lighting up a room,
not to mention an arena.
By all accounts, the first
27 days of Aria’s life seemed
normal. Then, with the onset of her first seizure, Aria’s
life, supported and accompanied by her devoted family,
mother Andrea, father Garratt, elder sister Alexis and
eventually younger sister
Addy, veered off on a challenging path.
Eventually, Aria was
diagnosed with PACS1,
caused by a mutation of
one gene, a condition which
causes intellectual disability, speech and language difficulties, and distinct facial
features.
“For Aria, this included
seizures as a baby, kidney
issues, and a heart murmur
which was repaired,” explained Andrea, adding that
the disabilities can range
from mild to moderate, and
often producing speech is
very difficult, “Although
Aria’s understanding of language is quite high.”
Through a slew of visits
to the Stollery Children’s
Hospital, a battering of
tests and stay-overs, Aria’s
journey began–a journey
filled with clinical intervention and what is likely to be
lifelong medical support,
but also a journey that has
proven once again that love
has the potential to conquer
all.
“Early on, Aria had to
have a lot of medications
which had to be administered orally, resulting in her
having some sensory concerns when it comes to certain triggers such as eating
or even going into a parkade
or tunnel, which she automatically associates with
going to the hospital.
“If she sees blue gloves,
she thinks nurse. But the
one place where nothing is
bad (in the sense of having
tolerating clinical procedures) is the hockey rink.
“Every positive memory, social interaction, smiles
have occurred at the rink,”
smiled Andrea.
“We actually started
billeting Kodiak’s players
when our oldest daughter
Alexis, who is now 12, was
just over two years old, and
Alexis had just started initiation hockey before Aria
was born. So we spent a lot
of time at the rink.”
However, when Aria
was born and started experiencing seizures, the family
decided to forego billeting
for that season.
“We were still pretty
new to the billeting about
three years in. We were also
new to the Camrose community.”
But it didn’t take long
for the Gutmann family to
realize the power of community and the true meaning
of family.
“Even when Aria was
in the hospital, the Kodiaks
players would come out and
shovel our driveway. It is
such a family.”
They started billeting
again the next season, when
Aria was just shy of a year
old. “Our billet was Slater
Strong, who was the biggest
kid ever,” laughed Andrea.
The bond between
the players and Aria was
instant every time. She
beamed when she
saw them and they
didn’t shy away.
“The boys
(players) would literally just take her
and go. You would
think these boys
would be scared of
a baby, but it only
took a few times
holding her and
the boys would get
more confident.
“It didn’t really matter who
we billeted, they
(players) were just
kind of drawn to
her,” commented
Andrea.
With the atmosphere of the
rink playing such
an important role,
these players are the positive
reinforcement Aria needs to
continue her growth, while,
on the other hand, Aria possesses a sense of calming for
these otherwise energetic
young men.
“She loves the rink
and everyone at the
rink knows her. She
is always happy when
she is there and that is
contagious.”
So much so, that even
when the players are having a rough go, Andrea says
their spirits seem to lift the
minute they see Aria, who
more often than not will
wait for them in the hallway
to the dressing room offering fist bumps, high fives,
huge smiles and lots of giggles.
“One day during a fist
bump, Aria actually said
‘hi’ to the player and he was
so excited he had to let me
know,” recalled Andrea,
adding that speech is the
one thing they really work
hard on with Aria, so this
was monumental for the
player.
Outside of the rink in
the Gutmann’s home (like
many of the gracious billets) is a place where players can just be themselves,
a place where they can feel
that sense of home that they
miss from being away from
their own.
“In the course of all this,
I also took on the responsibility of organizing the players into the schools,” said
Andrea. “So they are always
at our house. And it doesn’t
matter who the players are,
as soon as they are in our
house, Aria will come over
and scooch in beside them
on the couch or hug them.
And despite Andrea trying to warm to the newer
players, it comes so natural
to Aria that it is happening
before anyone can, or would
for that matter, say otherwise.
Even with the new player this year and the family
being unsure about how he
would react to Aria’s unfiltered affection, Andrea
said he took to her right
away. “He didn’t really have
a choice,” laughed Andrea.
“Aria just latched onto him
kind of like ‘you’re mine
now’ and he just embraced
it.”
For the players, it is as
though Aria were their own
little sister, treating her
with the same care, love and
patience.
“When I watch them,
they authentically engage
with her,” praised Andrea.
“She won’t eat meat regularly, but she will eat meat off
the fork of one of the boys.
It is so amazing to see them
just innately start feeding
her at the table.
“We don’t get to spend
a lot of time with the boys.
But dinner time for us is
that loud crazy time after
the boys have chased the
kids around playing with
them, they just have that
time. Then 7 p.m. rolls
around, and everyone goes
to bed.”
Now that Aria is older,
Andrea said she qualifies for Family Support for
Children with Disabilities
(FSCD). “We are always trying to find a way to improve
her speech, a way to get her
connected in the community with talking.
“We have a lady who
does her respite care. She
takes Aria a couple days
a week. So we asked Boris
(Rybalka, Kodiaks general
manager) if he would mind
if Aria and her respite caregiver came to the rink and
watch practices. He was immediately on board.”
Andrea said Aria helps
with water bottles, if appropriate, but always has
her iPad there practicing
speech. “If you want to bring
the best out of children, you
play to their strengths,” she
smiled. “I will always check
in to make sure it is okay to
bring her out.”
However, it never seems
to be an issue. The players go above and beyond to
make this sweet little girl
feel like she is part of the
team. “She was given a mini
stick that they made out of
a regular stick and taped
all up so she could use it
in sledge hockey. On picture day, Aria happened to
be at the rink, so the team
insisted she be in the team
picture.”
Beyond the tight-knit
closeness the Gutmanns
have with the Kodiaks organization, they have also
developed a strong connection with others in the rink
family.
“During COVID, Aria
started walking in her
walker, so we would take
her to the arena where she
could do laps and people got
to see her, and when COVID
shut everything down the
last time, people saw she
was in a walker,” explained
Andrea. “When families
were first allowed back in
the arena as COVID restrictions started to ease, only a
handful of people saw her
actually walking without
the walker. When we came
back this season, there were
people who were shocked to
see her running.”
The Gutmanns have
also been involved with Special Olympics Camrose and
Andrea commends the work
they do to not only build
community within
the organization,
but inclusivity in
the larger community as well.
“Carol Wideman’s son, Preston, would light up
when he saw Aria
at the hockey rink
and come over and
high five her. The
rink is a hub connection for family.”
C u r r e n t l y ,
Aria is registered
in Camrose Minor
Hockey U5, which
she began on her
sledge, then within a month, was up
on skates.
“ W h e n e v e r
they could, Kodiaks players
would come out
and work with
the kids. Those
boys do so much
for this community from serving
breakfasts at the
school, where they high five
students, to other volunteer work throughout the
community. When I have
sent them to other schools
for volunteering, I have received nothing but positive
feedback.”
Andrea says it is a reciprocal relationship, giving
of their time to volunteer
with organizations such as
Special Olympics Camrose
and the Kodiaks, has come
back tenfold to the family.
“Knowing that the
community is there,” she
paused, “is so comforting.
They showed up for us when
we needed them. You get out
of it what you put into it.”
The Gutmanns celebrated another milestone
for Aria on February 25,
when she received a service
dog from Dogs with Wings.
“Those dogs are incredible. It has quickly become
her best friend.”
This story of a little girl
and her bears–a group of
young men brought into a
community to play hockey,
but leaving behind them
so much more, is a shining
example of what a community can do when it pulls
together
A little girl and her bears
