A picture is worth a million words for Susan Maysak.
The 53-year-old aunt of Vikings rookie center Michael Jurgens is unable to hold a conversation, but with small noises she can convey to family that she's happy – that she understands them and is trying to talk.
"Pictures are the way to communicate with her," Jurgens expressed. "Every year we'll get her a little golden retriever calendar. Whenever she Facetimes with us, and we're around our dogs, she loves it."
"My mom's name is Mary; she'll say, 'Ma," Jurgens added, smiling. "Their aunt's name was Barbara and she was around a lot when they were growing up, so she goes 'Ma' and 'Ba.' Those are all of her sounds."
Susan's life is simple in a sense. She thoroughly enjoys pictures of furry friends, and loved ones checking up; she's a Dairy Queen connoisseur and an affectionate supporter of Jurgens' football career from afar.
Only, nothing is "normal" for Susan because she has Angelman Syndrome, which is a rare, incurable neurogenetic disorder that's caused by a loss of function of the UBE3A gene in the 15th chromosome.
Symptoms of Angelman Syndrome (AS) include intellectual disability and trouble physically moving. Seizures are common, according to the Mayo Clinic, and so are uncommon behaviors such as hand flapping and tongue thrusting. There are fewer than 50,000 people affected by AS in the United States.
"I will say, she's been in a good position for someone with what she has," Jurgens said. "You can tell how she's aged compared to my other aunts and uncles – she's aged a lot better – thanks to a stress-free life.
"But that's not without its burdens," noted Jurgens. "She'll come over on holidays. It's hard – especially being gone as much as I am – she has a hard time recognizing people outside of who she grew up with."
Susan didn't receive an AS diagnosis until she turned 21 due to sweeping unfamiliarity of the condition. Awareness for it has increased extensively since August, when Irish actor Colin Farrell shared that his 20-year-old son, James, was diagnosed as a baby with AS, and announced the formation of the Colin Farrell Foundation, which is aimed at creating lasting change for individuals with intellectual disability.
Jurgens is doing his part to raise awareness, as well.
This week, the Maryland native will step on the turf at U.S. Bank Stadium in specially designed footwear.
The base of Jurgens' cleats for his first career My Cause My Cleats game are painted forest green; the laces and Nike swoosh are a rich shade of gold; the actor's name is in cursive on the midsole; Farrell's foundational star is prominently drawn, and angel wings and a halo are the details that set them apart.
The AS awareness efforts will be doubled Sunday on Minnesota's sideline.
"Jurgens came up to me the other day and he's like, 'Hey, we have the same My Cause My Cleats.' I'm like, 'No way!'" Vikings assistant wide receivers coach Tony Sorrentino recalled. "I said, 'Dude, I don't know much about this at all.' And Michael was just walking me through it, talking me through it."
In September, Sorrentino's youngest sister, Samantha, was thrown a curveball. Her 1-year-old son, Cameron, was struggling to develop basic motor skills, and was diagnosed with Angelman Syndrome.
By fortuitous planning, Sorrentino will be able to honor Cameron ahead of the game against Atlanta, as Samantha's family, including her husband Adam and daughter Mackenzie, are flying in from New Jersey.
"We're Italian, so we're emotional and very close," Sorrentino remembered his family's reactions when he informed them that his shoes were being customized to support Cameron. "My mom was crying, my wife was crying. And I – just because I'm not around – maybe I'll get a little emotional seeing them this weekend. Just being removed from everybody, it's kind of helped me just be a little bit clear-minded."
Sorrentino hasn't seen Samantha since the whole family was together on the Vikings visit to the Giants in Week 1. Shortly after, they thought Cameron had fluid buildup in his ears, which spurred hospital trips.
"It was definitely tough. I try to – not being there, it's hard." Sorrentino said, sharing Samantha has handled Cameron's diagnosis well. "I have two sisters, I'm the only brother, not being there is tough, so I try to be very positive in everything. I kind of treat life like a football game; there's gonna be prosperity and there's gonna be adversity. You've got to treat them both the same and always look for the positives.
"We don't know what the future holds," Sorrentino added, considering that with technology, education money and research, functionality of people with AS may improve. "We're gonna take it one day at a time, one step at a time and celebrate the small victories. That's honestly what I believe in, in life – 'Hey, celebrate the small victories; hiccups are gonna happen, but we're gonna bounce back,' and if he takes a step or crawls, or if he responds, because he has a tough time hearing, let's celebrate that victory."
Sorrentino understands Cameron must go about life a little differently but knows he will be rallied around.
"Again, I just keep on telling myself things could be much worse, and he's such a happy little boy that that's like the key thing to me," Sorrentino assured. "I feel positive about the things he can accomplish."
Sorrentino plans to spruce up his blue and white sneakers, already highlighted in royal blue lettering with the words "Cameron" and "Family," with autographs from superstars Justin Jefferson and Jordan Addison. Maybe one day, pictures from the pregame meet-up will speak to Cameron like photos speak to Susan.
Sorrentino and Jurgens had not jelled a ton – as often is the case with rookie players and coaches of different positions – until broaching the subject of AS. But now they're bonded by a common purpose.
Helping raise awareness for Angelman Syndrome.
This Sunday, the universe devised them to be together. Like Samantha Kudlacik and her family of four, Mary Jurgens will be on hand. It's a chance to admire Cameron and Susan, and for the mothers to relate.
An opportunity to gain awareness through an improbable connection.
"I told my mom and my sister after I talked to him, like, 'Hey, this is kind of crazy.' What a blessing to be able to have that," Sorrentino said. "And for my sister to be able to bounce ideas [off] Michael's mom."
"It was just like a little bit of a sigh of relief," he emphasized. "Like, 'OK, we're hit with this,' but we're going to attack it, and we're going to take the small victories and stay together as much as possible."
