A little girl and her bears

By Lori Larsen

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.”

Currently, Aria is registered in Camrose Minor Hockey U5, which she began on her sledge, then within a month, was up on skates.

“Whenever 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.