A mysterious illness left this local teen unable to walk. Now his family is searching for a diagnosis.
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IDAHO FALLS — For more than a year, a local high school athlete has been plagued with an illness that affects his mobility. But so far, physicians have not been able to diagnose what’s wrong.
The mysterious illness first struck 15-year-old Konnar Sorg during the spring of 2017. Konnar started noticing weakness and pain in his feet while playing football at Bonneville High School.
“I knew something was up…but whenever it first started happening I just thought it was me kinda being lazy,” says Konnar.
Initially, doctors diagnosed the freshman with asthma and recommended physical therapy for the pain and weakness in his feet. But no matter how much he trained, Konnar’s condition continued to worsen.
“My legs just stopped working,” Konnar recalls telling his mother.
In December 2017, Konnar fell down the stairs at school, but attributed his fall to possibly tripping. He started becoming more suspect when, just a week later, it happened again, and Konnar broke his left wrist.
“I cried and cried when we found out that his wrist broke,” mother Amber Sorg recalls.
Konnar’s parents began to suspect something else was affecting their son and then things got even worse.
After trying to run the mile for a physical education class, Konnar found himself unable to breathe. School nurses could not get Konnar to stop hyperventilating, so he was rushed to urgent care. Soon after, Konnar’s lung function started to deteriorate.
Konnar was prescribed asthma medication but it only made breathing harder. Feeling scared and confused, Konnar and his family began to search for answers.
He began extensive medical testing in January 2018. Konnar had his heart and muscles tested for any possible underlying issues. He has also received six lumbar punctures and multiple MRIs, but after nearly a year, Konnar and his family are still no closer to a diagnosis.
“I would say most of the tests hurt,” says Konnar. “Whenever they did the testing and stuff like that it was pretty hard.”
As of now, Konnar’s symptoms are severe muscle weakness, muscle cramping, difficulty breathing, and nerve pain in his arms, legs, and feet. Konnar often loses feeling in his hands and feet along with his other symptoms.
Despite the lack of diagnosis, doctors haven’t given up. Konnar has spent the last few weeks doing physical rehabilitation at Eastern Idaho Regional Medical Center in Idaho Falls. He continues to travel to Primary’s Children Hospital in Utah as well as the Mayo Clinic in Minnesota for further testing.
EastIdahoNews.com spoke with Konnar’s doctors about his condition, however, they declined to comment on the record.
Konnar is currently undergoing muscle dystrophy testing, genetics testing, blood testing, and nerve testing at the Mayo Clinic. Konnar is even spending his 16th birthday (Tuesday) in a hospital bed at the Mayo Clinic.
“I’m not really a big fan of hospitals myself, but I’m actually kind of happy I am here because I know I’m not going to get any better if I’m not,” Konnar says.
Amber Sorg is desperately hoping for a diagnosis as this unknown illness has begun to severely affect her son’s mobility.
“His quality of life has totally changed and without having answers it makes it really hard to give him support and give him that quality of life back,” Amber says.
At this point, Konnar can barely walk on his own. He is completely confined to either a bed or wheelchair, Amber says. It is almost impossible for Konnar to brush his teeth or use the restroom alone.
Although Konnar’s condition inhibits him from playing football or doing many of the things he loves, Konnar uses positivity to capture his love for sports through photography.
His parents also work to remain positive, although it can be difficult as they struggle to balance full-time jobs as well as three other children.
“I have to work,” Amber says. “I don’t have a choice. … It’s been really hard.”
A GoFundMe page has been created in order to help Konnar’s family pay for airfare and medical bills as they continue to search for answers.
So far, the Sorg family has been able to rely on the goodness of others to help them during this difficult time.
“I’ve gotten lots of support,” Konnar says. “I’ve even gotten support from people who haven’t even known me that well.”
And because of all that support, the family, and especially Konnar, have been able to maintain a positive outlook.
“I guess I just have always been a positive kid — never really have been the one who gets sad or angry,” Konnar says.
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