Take me to EIRMC for pediatric care: They put together the puzzle and offer lifetime support
Like pieces to a puzzle, Konnor Sorg received one small, sub-diagnosis at a time. The slow progression of his disease gave him a normal childhood, but when he entered high school, mysterious and dangerous symptoms came crashing down – along with every ounce of energy.
While running in P.E. on day, Konnor collapsed and stopped breathing. On another occasion, his legs gave out while walking down the stairs, and he plummeted to the ground, breaking his wrist with the fall. And although he trained with the high school football team and a personal trainer, this 6’ 5” young man’s strength continued to decrease instead of increase.
“His body wasn’t normal. One afternoon he struggled communicating, hearing and seeing, and he was extremely lethargic. I took him to the ER, and once we got there he could no longer walk,” said Amber Sorg, Konnor’s mother. “We stayed at Eastern Idaho Regional Medical Center (EIRMC) for five days that visit and had multiple physicians, pediatric neurologists and others helping. … This began our journey to find a diagnosis.”
Coming home: EIRMC provides answers
For the next four years, Konnor and Amber sought answers. They traveled to prominent out-of-state hospitals for long stints, gathering information and undergoing testing. The initial pediatric hospital misdiagnosed Konnor, but the next cross-country facility helped identify several more sub-diagnoses – like severe liver, heart and respiratory conditions. Yet, they still didn’t have an official, overarching diagnosis or treatment plan.
“It wasn’t until after three to four years of hell and going to all these ‘huge’ places that we came back home, and the doctors here put the actual pieces together. At home we finally received a diagnosis and the support we needed,” Konnor said.
EIRMC physicians collaborated closely, and diagnosed Konnor with mitochondrial myopathy, a rare degenerative neuromuscular disease caused by damaged mitochondria, which serve as the power source for cells.
Amber explains the condition this way: “The mitochondria act as battery packs in cells. With this disease, the mitochondria may not stay charged or they just don’t work anymore, and some didn’t even work from the beginning. As the disease progresses, the battery packs become more and more deficient.”
EIRMC: A lifetime of relentless support
Since Konnor’s condition will continue progressing, he sees a multitude of specialists at EIRMC on a regular basis. Together, they manage Konnor’s symptoms and sub-diseases, providing support, medical attention and resources as he faces tremendous health challenges.
For example, when Konnor had his tonsils removed to assist with severe sleep apnea, the trauma from undergoing surgery enraged his disease, and he spent a month in the hospital. Konnor not only lost his tonsils, but he lost his ability to walk and complete everyday functions like brushing his teeth.
“Konnor has re-learned to walk three times so far. The pediatric physical and occupational therapists at EIRMC are incredible! They could give you a play-by-play of Konnor’s medical history, and Konnor will never move out of the pediatric care because of them. It’s hard to put into words how much they mean to us,” Amber said.
Konnor meets weekly with his pediatric occupational and physical therapy experts. They strive to keep Konnor in what they lovingly referred to as his “unicorn realm” – a state of activity that maintains physical strength but does not exasperate it.
“When I first started PT, Brianna (my therapist) wanted me to lay on the ground and get up as fast I could. It took more than 3 minutes to get halfway off the floor. It was so hard. Now I’m able to do it in a few seconds. That’s huge to me,” Konnor said. “These people have had my back the whole way through. It’s really nice to have them.”
Incredible examples of resilience and positivity
Konnor is now 19 years old. He enjoys photography, driving his own truck and working at Texas Roadhouse. With all he faces and has gone through, he stands as a remarkable example of resilience and positivity.
“I’m not worried about this at all,” Konnor said. “Now, that might sound like I’m being courageous but really I’m just not scared. It is what it is. I’m told all the time that I might not walk, or my hands are going to give out – I take that as a challenge. I want to see how far I can get to beat the odds. I’m learning to make goals and do the impossible.”
No one knows more about Konnor’s tremendous journey than his mother.
“He’s had to fight mentally and physically every step of the way to get to the point where he’s at now. He’s a powerful example of happiness and endurance. Everybody needs a Konnor in their life,” Amber said.
Both Amber and Konnor recognize that his health and quality of life requires a team effort; and they expressed gratitude for having the best healthcare available and close to home.
“Hands down, no matter what and without hesitation, I will always take Konnor to the doctors and care specialists at EIRMC first. Why? Because of the way they treat and recognize him, and the way they support our whole family. I am extremely confident in their abilities and care,” Amber said.