CANFIELD, Ohio - Nine-year-old Sophia Soman of Canfield has a disease believed to be so rare, she's the only known child her age to have this condition. 

Despite her pain, her family said Sophia is a superhero and is fighting the disease with a smile on her face in hopes they can find answers.

Soman's condition is called Median Arcuate Ligament Syndrome.

It's exhausting for Sophia to function, and painful to eat resulting in weight loss. The only way she can get her nutrients right now is through a feeding tube.

Her mother, Heather Soman, said Sophia is the only child so far to be found with this condition and it's so rare that doctors don't have enough research to properly treat it or understand the effects.

Soman said the disease can be life threatening if the body isn't getting enough nutrients.

"We're hoping there's another case or two. There's not a big database. Our surgeons have looked, we've looked, our doctors have looked," Soman said, "We have not been able to find another case."

According to the Mayo Clinic, the condition happens when the arc-shaped band of tissue in the chest area presses on or traps the artery that supplies blood to organs.

"She doesn't have the right blood flow so her fatigue is so extreme," her mother said.

Sophia was diagnosed early this year after getting COVID-19.

In April, she underwent surgery in Columbus and spent weeks in the hospital.

"It was very, very stressful... painful," Sophia said, "The fear on my parent's faces whenever I'm in pain, that scares me so badly."

She's still not in the clear after developing more complications after surgery on top of battling COVID again, twice.

"We're not sure what else is going on in her body and that's what they're trying to figure out now," her mother said.

Despite what Sophia is dealing with, she manages to light up the room.

She's gone viral on TikTok, with over 4,000,000 views and over 16,000 followers. 

"I feel so wonderful and happy because I am helping so many people," she said.

She hopes her energy can lift anyone who needs it and hopefully connect with others out there battling this condition.

"It's a very difficult puzzle, but the puzzle is going to get solved," Sophia said, "So it's just a puzzle that's going to take a while because the puzzle is very big."

Soman said they are continuing tests for Sophia and hope more research will bring answers.