PERRY COUNTY (WSIL) -- A Pinckneyville teen is on the road to recovery after a recent kidney transplant.
Better known by his mom as her "rock n roll" kid, 16-year-old Jonas Huntly seemed like a natural playing percussion.
"He loves it. He loves the marching band. He loves marching season," said Mom Cara Bochantin.
Watching him, you would never know Jonas has been living with a rare kidney disease called Nephrotic Syndrome since he was 7-years-old.
"His kidneys spill protein, but they're basically a normal kidney, so if you were to be able to look at his kidney's, you wouldn't be able to see a difference in them, between his and yours," explained Cara.
Cara vividly recalls the day she noticed his face had changed.
"It was a Saturday morning. He crawled into bed with me, and I opened my eyes, and that was the first thing I saw was his swollen face."
She eventually took him to the E.R., where the doctor told her to see a specialist immediately. When she did, doctors at Children's Hospital in St. Louis diagnosed Jonas with Nephrotic Syndrome.
"You'll see it in their face, and you'll see it in their feet. It's also in their abdomen, so if he swells in his abdomen. He almost looks like he's pregnant."
After the initial treatment didn't work, Cara said, they dove into a cocktail of other options.
"We had to start this nightmare journey of trying every medication they could think of to try and just get him stable, at one point was our goal."
In December of 2019, the family found out Jonas's kidneys were failing. In March the following year, Jonas was put on dialysis and forced to do that every day from home for 10-hours a night.
"I can't control this," said Cara. "All I can do is listen to the doctors and let him live his life."
All while waiting until Jonas was healthy enough to be on the waiting list for a kidney transplant. The mother of four says her faith and trying to keep positive is what has helped her throughout the years.
"We go through a lot of phases because it's a rollercoaster. He might go two years and not have any issues, so those two years when he's just taking medication, it's easy to pretend like this isn't happening, and we live our lives."
When the Coronavirus hit, their family had to isolate to keep Jonas safe.
Isolation meant no longer hanging out with friends, attending school, or playing in the band.
"Even if it was hard as a mom to watch it, and you are scared, it's his life at the end of the day. So that's what you do, you have a lot of faith that Gods in control."
She said, over the years, the family has had a lot of support, starting with her work colleagues and long-time beautician. From there, it grew community-wide.
"We appreciate every thought and effort that's going towards us because that says a lot about people. Being willing to help, being willing to support, even when you can't be there physically and you can't understand it completely, and you still want to help, that says a lot about our community."
Cara said the last nine years changed her family for the better. She said it makes them more appreciative and more empathetic toward others.
"Even on bad days when you feel like, I can't do this anymore. You're still grateful that you got another day."
She also has advice for anyone who may go through something like this.
"Get a counselor. You're going to need it. Find a good church. You're going to need it, and don't give up. Find joy in all the small things."
In early November, things moved rather quickly for Jonas. Just 20-days after getting on the donor list, Cara got word a kidney was available.
Election night, Jonas received his new kidney. Cara said spending time at a children's hospital is like nothing she has ever seen before, so even on your worst days, when flooded with tears, always be grateful.