By Mayo Clinic Health System
Ty Wiberg has never been one to take no for an answer.
“I think his tenacity and his ability to just keep going and keep a positive attitude when things are rough is pretty amazing,” says Michele Wiberg, the 13-year-old Chippewa Falls boy’s mother.
His father, Al, agrees.
“That’s the biggest thing that I see with Ty, too, is he always wants to try new things,” Al says. “ ‘If everyone else can do it, why can’t I?’ It’s that type of attitude. He never gives up. He tries as hard as he can, and he wants to be like everyone else.”
But unlike everyone else, Ty has a birth defect called spina bifida, a spinal cord malformation. The condition occurs in utero when the neural tube fails to develop or close as it should – potentially causing damage to the spinal cord and nerves, and a wide range of physical and cognitive disabilities.
Ty’s parents learned they were going to have a son with spina bifida during their first ultrasound and were warned early on that he may never walk.
“You’re excited about your first child, and the news was pretty devastating for us, because you don’t ever want anything to be wrong with your child,” Michele recalls. “But something deep down inside as a mom said ‘No, he’ll be able to walk.’ And he has.”
Not only that, but Ty mono-skis, distance races with a wheelchair, is certified in scuba diving, plays wheelchair basketball, is trying out for swimming, plans to partake in track and field, and will test for his black belt in karate on Saturday (March 7).
Ty’s attitude inspires others
“I really like doing stuff outdoors,” says Ty, a seventh-grade honor student at Chippewa Falls Middle School who also speaks publicly about living with limitations.
“I talk about going above and beyond,” he says of his key messages. “We all have limitations, and if there are things that we don’t think we can do, we’ve just got to put our minds to it and find different ways of doing it.”
Jane Byrd is Ty’s pediatric & adolescent medicine physician at Mayo Clinic Health System–Chippewa Valley in Chippewa Falls. She’s known Ty since his birth and describes him as “an ideal young man” who’s incredibly motivated. “He is an inspiration to everybody, whether or not he had spina bifida,” Byrd says.
Spina bifida often can affect patients’ independence and activity, but Byrd notes that Ty’s disability certainly is not limiting him. “He’s probably more active than a number of children I have who have no underlying disabilities,” she says.
Ty, who walks with braces and uses a wheelchair for distance because of complications related to spina bifida, receives his general medical care in Chippewa Falls and more specialized care from the Spina Bifida Clinic at Mayo Clinic in Rochester, MN.
Sherilyn Driscoll, Ty’s pediatric physical medicine and rehabilitation physician at the Spina Bifida Clinic, sees him every six months to a year or more frequently if he’s having concerns.
“My role is to think primarily about function and to help Ty be comfortable and perform at his maximum potential,” Driscoll says. “I help with things like prescribing braces or orthotics, or thinking about how we can accommodate a certain type of activity to help him be more successful at it.”
She also monitors Ty for any neurological or musculoskeletal complications that may require a referral to a surgeon or be otherwise medically treated; makes recommendations for private physical therapy, if needed; and helps manage his bowel and bladder issues.
Ty’s care carefully coordinated
Driscoll and her Mayo Clinic colleagues communicate regularly, ensuring a coordinated, cohesive care plan is in place for Ty and all their patients. The communication and coordination extends to Ty’s doctors back home as well.
“We love Dr. Byrd, and the collaboration in Rochester in that Spina Bifida Clinic is just amazing,” Michele adds. “I wouldn’t want my son to go anywhere else.”
The Wibergs also express their appreciation to Deb Rundquist, nurse coordinator for the Spina Bifida Clinic at Mayo Clinic, who helped connect Ty with a special camp for kids with spina bifida and who Michele describes as their “go-to source” and “an integral part of the communications between the two facilities.”
“She’s such a great conduit between us, living here, and the multiple doctors Ty has in Rochester,” she says. “From a parent perspective, she is just amazing. She just helps navigate anything we need in a system that could be overwhelming.”
Ty has undergone 16 surgeries to date – the first when he was just one day old – and likely faces more in the future. In addition to requiring braces to walk, he suffers from hydrocephalus, a buildup of fluid in the brain for which a tube-like shunt drains excess fluid; has limited sensation from the knees down; and battles bowel and bladder management issues. Through it all, he’s shown nothing but resilience, his family and doctors say.
“He’s very positive and optimistic and just has such a great attitude about everything that gets thrown his way,” Driscoll says.
She recognizes both Ty and his parents for their respective parts in his empowerment.
“I credit his parents for being true advocates for their son,” Driscoll says. “They have worked incredibly hard to find him opportunities to pursue and to find the right coach to teach him whatever it is he’s learning at the time. Because of his physical challenges, they’ve had to adapt a lot of what they have been able to offer him, and they’ve done an amazing job.”
At the same time, Ty wouldn’t be who he is “if he didn’t have his own powerful internal drive to do everything that he possibly can too,” she adds.
“He is truly exceptional in all of the physical activities that he has pursued over his young life,” says Driscoll, who expects Ty to live a normal lifespan and lead a full and continued active life into adulthood.
Ty’s ultimate goal?
“I want to be a doctor at Mayo Clinic,” he says. “I want to work at the Spina Bifida Clinic.”
Editor’s note: For a video of Ty Wiberg and his family, go to http://mayoclinichealthsystem.org/hometown-health.