Supporters pack the room to show love for heart patientPeople who know her describe Mara Krysiak as tiny, but a powerhouse. The 21-year-old from Superior, born with a genetic heart condition, will need all of her strength as she fights for her life at Children’s Hospital of Wisconsin in Milwaukee.
By: John Lundy, Duluth News Tribune
People who know her describe Mara Krysiak as tiny, but a powerhouse.
“She’s the strongest person I’ve ever met,” family friend Pam Houle said on Saturday. “She’s determined to beat this, and she’s going to.”
The 21-year-old from Superior, born with a genetic heart condition, will need all of her strength as she fights for her life at Children’s Hospital of Wisconsin in Milwaukee. After becoming only the second person to receive an artificial heart implant at the hospital on Nov. 11, she developed a blood infection a week ago.
“The last week hasn’t been very well,” said her mother, Heather Krysiak.
If Mara and her family — her dad, Craig, is with her at the hospital; brother Collin is 17 — need any additional strength, it was there in abundance on Saturday afternoon at the Kom-on-Inn in West Duluth.
The bar was packed as friends and well-wishers gathered for a fundraiser on Mara’s behalf. They paid $10 for a meal of spaghetti and meatballs and participated in an auction — buying raffle tickets at $1 apiece, signing their names and dropping them in white sacks for a chance to win a prize. Among them: a Pampered Chef gift pack, a 50-piece home tool set, and 100 gallons of fuel oil or propane from Como.
Organizers wore white T-shirts inscribed with “Team Mara” on the front. They were gratified by the no-room-to-move turnout.
“We were hoping for 600 people today,” family friend Stephanie Evans said near the event’s halfway point. “We’re thinking a lot more showed up.”
Mara and Heather Krysiak share the same heart condition, hypertrophic cardiomyopathy, as did Heather’s mother, Mary Kaye Talaska. It’s a genetic mutation in which the heart muscle becomes abnormally thick, according to the Mayo Clinic’s website. Talaska died from the condition at age 25, when Heather was 3½. Heather was diagnosed with the condition when she was in kindergarten, and Mara also was diagnosed when she was in kindergarten, Heather said.
“She has always had this problem, always knew that she was going to have a transplant, but she went about her life like there was nothing wrong,” family friend Gus Omundson said of Mara. “She’s just very special.”
Over time, Mara was told she could no longer play softball or volleyball, her mom said, but she was able to keep bowling. “And she’s a very good little bowler.”
But in her teen years, it became harder for Mara to run or walk up the stairs or bowl. Finally, she had a heart transplant at Children’s on Nov. 24, 2012. Less than a year later, on Aug. 1, 2013, Heather also received a heart transplant.
So far, that’s going well, Heather said. Her most recent exam, on Thursday, showed no signs of rejection.
But that wasn’t the case for Mara, whose body fought her new heart. Finally, 13 days shy of the transplant’s one-year anniversary, the new heart failed, Heather said. That’s when Children’s doctors turned to the SynCardia Total Artificial Heart implant. According to the company’s website, it’s intended to sustain life until a suitable donor heart is available. One recipient survived for nearly four years and then received a successful transplant.
Mara’s progress after the implant was “on and off,” Heather said, until the life-threatening blood infection arose.
Meanwhile, there are bills to pay. Although the family has health insurance, the co-pays and deductibles are adding up, Heather said. She hasn’t seen the bills for the artificial heart implant, but Mara’s earlier transplant in itself resulted in bills for $127,000. Thus, the need for a benefit.
Omundson and his wife and Houle and her husband own the Kom-On-Inn, and they were happy to provide their bar as a venue.
“To help the family, we’d have done just about anything,” Omundson said.
Her family’s experience has made Heather Krysiak an advocate of organ donations. If she survives, Mara eventually will need another heart transplant. Her kidneys have failed, so she’ll need a kidney transplant as well.
“Can you just promote organ donation somehow?” Heather asked. “Because God doesn’t want your organs, so don’t take them with you.”
The Krysiak family is holding up well through the turmoil, Houle said.
“They’re strong because Mara’s strong,” she said. “Everyone keeps praying, and she’s going to turn the corner and get through this.”
How to help
Direct donations can be made on YouCaring.com. Search for the name Mara Krysiak.