From The Journal – Crosby, ND
By Sydney Glasoe Caraballo
Payton Mueller, 15, wishes his mom would let him get a faster vehicle.
His current wheelchair can only go up to 6 mph. One of his buddies has a wheelchair that can go up to 20 mph; he likes to hunt, and his chair is like a 4-wheeler, according to Payton.
Payton grudgingly gives his mom some credit for her speed limit restrictions.
“I’ve broken all of my wheelchairs at least twice and flipped them too,” Payton says.
He has also test-driven an all-terrain track wheelchair through Anne Carlsen’s Adaptive Recreation Program at Bottineau Winter Park in the Turtle Mountains. He looks forward to driving it again this year and hopes the instructors will allow him to test out more gears and greater speed.
“They only let me go in the slowest gear possible last time,” laments Payton.
Payton was chosen to test drive the vehicle for comfort and leg position before it became available for general use at the park.
Now he is featured driving the track chair in the upcoming 2016 Anne Carlsen Center [ACC] calendar. ACC is celebrating its 75th year of providing “personalized care to individuals with disabilities, empowering them to succeed in all areas of life.”
Payton is rather unconcerned and frankly, oblivious, about the publicity honor when asked about it.
“What calendar? Are you sure I’m in the Anne Carlsen calendar?” he asks. “You better ask my mom to make sure that’s right.”
His mother, Rachele Krebsbach, gives him a look and reminds him about it.
Payton understands that ACC is utilizing him as a role model and spokesperson for other children with disabilities. But he would much rather talk about what is possible for him and others like him — catching a sunnie or walleye, bobsledding down a ski hill or towing a train of wagons to give his cousins a ride even if it does kill his wheelchair battery.
Payton has spinal muscular atrophy (SMA), which was diagnosed when he was an infant.
Rachele calls brutal a doctor’s early prognosis that Payton would never walk and might not survive beyond age 21. Despite that pronouncement, she knows her son can live a full life, and that setting a time limit for him is not only beatable but foolish.
As she waits for Payton’s freshman study hall, she says his physician at Johns Hopkins Hospital in Baltimore treats an SMA patient who is 54 years old.
As a special education teacher, Rachele is skilled at advocating for her son.
From annual surgeries to the back brace Payton wore from age four to nine to the multiple muscular disease conferences Rachele has attended and Payton’s week at MDA (Muscular Dystrophy Association) camp each year, she has ensured her son receives the best care, support and long-term outcomes possible, including swim therapy at St. Luke’s Medical Center.
He has experienced eight back surgeries since 2009 during which growing rods were inserted into his back to straighten his curvature.
Last summer will hopefully have been his final surgery. He had one extra surgery after breaking rods while “showing off.”
The biggest danger for Payton and others with SMA is muscle weakness related to breathing. They are susceptible to impaired respiratory function and infections, which can be deadly.
But Payton has been lucky to have only had pneumonia once – this past summer.
“Payton is strong, and he’s healthy,” Rachele says. “He has done way better than expected.”
She credits living in Crosby to helping his overall health due to the small population of people — and germs.
“He’s exposed to the same people, the same germs, all the time,” she said, but one day he will leave for college.
Rachele is already considering the benefits of getting a service dog for him.
Payton loves math for its absolutes, formulas and equations. He wants to be an architect.
He isn’t overly worried about where he might attend college and is more focused on this upcoming summer without surgery. He will go to MDA camp again, spend time with his father, David, and visit his grandmother’s farm with his cousins on his mom’s side of the family. He also looks forward to bobsledding this winter and driving the all-terrain wheelchair again.
When Rachele received an e-mail regarding disabled children trying out Annie’s bobsled, she knew Payton would definitely want
When asked how the bobsled works, Payton’s answer is smart – delivered with a smirk. “It goes downhill.”
Then he laughs and gives a patient and gracious explanation.
The bobsled has two skis underneath and skis on each side. Payton guides the skis while also having a skier harnessed behind to further direct the course and sled’s speed. A spotter skis backward ahead of him to ensure no one is getting too close. The skiers were still in training when Payton first tried the bobsled.
“I wanted to go faster,” he says. “They would only let me go down the bunny hill.”
Now that the skiers are fully trained, Payton’s brown eyes brighten at the thought of the speed he may go.
He, of course, wants to try the steepest run.