When you’re 17 the only things that should take your breath away are the firsts you experience as you discover the world and its possibilities.
That’s not the case for Transcona resident Tianna Kowalson, who has been diagnosed with a medical condition so rare she has to go to the United States for treatment.
It’s an expensive trip and her family is reaching out to the public for help.
Normally an active girl who played sports in junior high school and excelled as a saxophone player, Tianna began having unexplained shortages of breath when she was 14.
She was eventually diagnosed with a pericardial cyst which, in itself, is not that rare. But the size and location of Tianna’s cyst posed a challenge. It is situated near the phrenic nerve, which plays an important role in breathing.
Because the cyst wasn’t on the heart, heart specialists couldn’t treat it. Because its placement was rare, the doctor to whom Tianna was referred to was reluctant to act. Some people suggested her symptoms were all in her head.
"I just wanted to be done and to be able to go to school instead of worrying about appointments," Tianna said.
The ordeal has taken its toll on her parents, Delores and Michael, and her sisters Brenleigh, 21, Hailey, 20, and Alliyah, 15.
"For me some of the worst is the guilt," Michael said. "Sometimes there’s a point where you wonder for a little while ‘Is the doctor right? Is there nothing wrong with her?’
"When you’re a parent you can see when your kid’s panicking," Michael said. "You can understand the difference between somebody faking it and pure panic."
The Kowalsons quickly become experts on a rare medical condition so they could properly advocate for Tianna’s care. Their research has led them to the Mayo Clinic in Rochester, Minn., where specialists have dealt with similar cases.
But the Mayo Clinic is a pricy place. The Kowalsons have to pay a $7,000 US deposit and are expecting to pay an extra $3,000 US to complete tests. They also have to cover travel and living expenses for the expected week they are there. They estimate the final tab to reach $15,000.
Michael has taken a second job and family and friends are holding bake sales to help. They have also started a campaign on crowdfunding site GoFundMe.
Free Tianna’s Heart has raised close to half the total so far and the family is reaching out to everyone to help.
Michael knows this may only be the beginning of the fund raising.
"If the Mayo Clinic comes back and says she needs this surgery and the government of Manitoba says no, then I’m looking at having to raise in the area of $100,000."
Tony Zerucha is a community correspondent for Transcona. Email him at email@example.com