Photo credit: Olly View Photography
Moving to Medina
October of 2015 was quite a month for Justin and Phalen Stang. After getting married on October 3rd and spending their honeymoon in Jamaica, they returned to Minnesota just in time to close on their new home in Fields of Medina. They moved in with their three children, Tyler, Aliyah and Carter, from Phalen’s previous marriage. A few months later Justin and Phalen received exciting news that Phalen was pregnant and the two of them were expecting a baby boy in July 2016.
Yet, the positive chain of events they experienced back then is a distant memory to what they’ve endured over the past 18 months. While working full time for medical device startup Nuvaira, Justin’s third within the industry, the couple had always dreamed of opening their own business. In July of 2021, that dream started to take shape when they signed an agreement with Nautical Bowls to open their own franchise in Maple Grove. As a full-time mom and with their 3 older children more independent – their eldest son Tyler had moved out and Aliyah would be graduating high school in a few years – it appeared Phalen would have more time to devote to their new venture.
Carter’s Initial Diagnosis
In August of 2021, less than a month after signing with Nautical Bowls, the Stang’s 12 year old son, Carter, was diagnosed with a genetic heart condition called arithmarrhythmogenic cardiomyopathy. The diagnosis made at Children’s Minnesota Heart Clinic was triggered at Carter’s routine annual checkup where Phalen mentioned her ex-husband’s heart episode a few months prior. After Googling the condition, Phalen was devastated to find a 5-year life expectancy associated with arithmarrhythmogenic cardiomyopathy. Feeling helpless, she reached out on Facebook to anyone who may know more about this condition and received a response from a nurse friend confirming the 5-year life expectancy. This led Phalen into a spiral of depression, she cried all day, every day and was unable to eat, drive or take care of herself… much less anyone else. Soon thereafter she was diagnosed with severe anxiety. Given they were not particularly happy with the level of communication and care from Children’s, Justin reached out to the Mayo Clinic for support.
Hard Question and Hard Answers at Mayo
Within a week of filling out the necessary forms, Carter was accepted to receive treatment at Mayo. Additional testing confirmed the original diagnosis, yet when Carter took an exercise test there it showed his heart rate as normal during exercise and were actually initially more concerned with his heart during rest. This came as a relief given Carter is a talented athlete and was slated to be the starting pitcher for the 7th grade Wayzata baseball team following the basketball season where Carter helped his team win four championships. That moment of levity would prove to be short lived. After having an episode where Carter blacked out going through airport security coming back from a family trip in Orlando, they would soon learn that Carter needed an implantable cardioverter-defibrillator (ICD) placed and would not be able to participate in any sports for the foreseeable future. At that time, the doctor further warned that Carter was at risk of dying suddenly on the field if he did play, a fate that Carter’s biological dad’s cousin suffered in 2021 while playing hockey with a related genetic condition.
On May 6, 2022, Carter underwent heart surgery. Only a few weeks before the family’s Nautical Bowls grand opening took place. In fact, Justin recalls interviewing a new hire for the business while they were waiting for surgery. They soon learned that Carter would need a heart transplant at some point in the not-so-distant future.
Phalen described one of the hardest parts of it all is when Carter began to research his condition online and asked questions like, “What is the longest life expectancy after a heart transplant?” and “How many athletes go pro after a heart transplant?” Or “How many hearts will I need to get?” The latter answer suggests it is very likely Carter will need more than one heart transplant over time. However, Justin pointed out that recent medical advances suggest Carter could someday have a heart grown in a lab with his own genetic makeup, a solution that would be superior to anything modern medicine has been able to offer thus far. Going forward, their family is in a holding pattern waiting until a “trigger event” occurs (likely within the next 2 years) causing Carter to be put on a donor list. When that happens, the family will need to remain in proximity to the surgery center at all times as a heart transplant must be done within a very short period of time once the donor heart becomes available.
Though Carter wasn’t able to play in the 2022 season in baseball, he was able to play in the last state tournament. Soon after he tried out for a club in Prior Lake and made the team despite hardly playing for months. His mom described it in detail, “He was still scared to pitch, but I finally told the coaches to throw him in. They did the next game. He hadn’t pitched in over a year and had 35 pitches with 23 strikes as well as four hits and three strikeouts over two innings! He was smiling ear to ear and back to doing another thing he loves. Not only did we think his pitching was great, but the umpire walked over to Carter’s coach after he pitched and said that he’s by far the best pitcher he has seen for that age group… EVER.”
Through it all, the final diagnosis was that Carter has a very rare form of arrhythmogenic cardiomyopathy. His biological father also had the gene, though only had a 10% chance of passing along the specific variant. It is so rare that it is the first time Mayo has ever seen that specific gene mutation. After multiple tests, procedures and surgeries, including a full sternotomy (cutting through your chest with a bone saw), where Carter described as being “so scared” when he went under general anesthesia, none of it has broken his spirit. Throughout my interview with them, Phalen would recollect the chain of events with stunning accuracy on dates and times, while Justin added additional context. At one point, with tears in her eyes, Phalen emphasized her husband’s resolve and ability to hold their family together given everything that was thrown at them. She was proud to note that, “Carter is a trooper. Yes, he stresses about it, but he never has once complained or asked ‘Why me!?’” She went on further, “they say God only gives you as much as you can handle, and at times I wonder how much more we actually can. But then I see other families at the hospital, learn their circumstances, and realize how so many have it worse. We will get through this.”
For all the trauma the Stang family has been through in the last 18 months, including their now 6-year-old son, Beckett breaking his arm last September playing with friends in their yard, they haven’t given up on anything. Justin continues to work his full-time job at Nuvaira in addition to partnering with Phalen in managing and operating their Nautical Bowls store, along with the help of Aliyah. They recall that Beckett has been so cooperative about hanging at the store when they’ve needed to cover shifts or work late; he sometimes even sleeps on an inflatable (pool floaty) that he chose himself. Justin did admit that this past winter, Beckett seems to be “over it” and they’ve been doing their best to coordinate schedules to ensure their kindergartener gets a bit more normalcy moving forward.
When describing their favorite parts of running Nautical Bowls, Phalen says she likes the social part of it the most and enjoys talking with customers as well as keeping the shop extra tidy. Justin prefers the business side of things, though notes that part is where a lot of the stress lies. Given he is currently working two full time jobs to support a large family with growing medical bills, stress is something Justin has become all too familiar with.
If you haven’t been there yet, consider checking out and supporting the Stang’s local business; just make sure you go to the “right one” located in “The Grove” at 15609 Grove Circle North Maple Grove, MN 55369, as there is another Nautical Bowls in Maple Grove under different ownership. Not only is the food delicious and the concept native to Minnesota, their plant-based bowls are made with organic, natural ingredients and are gluten-free, dairy free, soy free and made with no refined sugar. The Nauti Bowl, Big Island Bowl and Paddle Bowl are the most popular, Phalen’s favorite is her custom mix of acai, peanut butter and almonds. For someone who holds the record with over 700 rides at the late local spin studio concept, Addiction Cycle (closed in spring 2020 due to Covid), it’s not surprising to see her behind the counter of a healthy operation. ecretary for his league for many years up until recently.