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Peoria Baby's Life Saved By Innovative Medical Treatment, But Expenses Are Mounting

A Peoria baby will see her first Christmas after her life was saved by an innovative new medical treatment.

Brooklin Konczak was born on March 18, 2020. She has Spinal Muscular Atrophy Type 1. The Cleveland Clinic says the disease is usually apparent at birth, and almost always results in death by age 2.

Brooklin was diagnosed with SMA in August. After first seeking treatment at the Children's Hospital of Illinois in Peoria, Brooklin's family took her to Lurie's Children's Hospital in Chicago for care.

"They had told me they didn't think she was going to make it. We thought we were going to lose her," said Angela Konczak, Brooklin's mother. "They petitioned our insurance for a revolutionary new treatment. It's a brand new treatment called Zolgensma. It's called gene replacement therapy. And what it does is it works to replace the genes that are missing. And it basically stops the progression of her disease."

Konczak said Brooklin was treated in time to completely prevent some deleterious effects. But the infant has lost function in her arms and legs, and the ability to eat food with her mouth.

Konczak said SMA screening wasn't widespread for newborns when her daughter was born, but that has changed recently.

"I guess the biggest thing is the awareness for it," Konczak said. "And getting your kids treated as soon as possible. Because you want to get them treated before they begin to lose complete function. Had my daughter not received treatment, she would not still be here today."

The family's ordeal hasn't come without financial challenges. Insurance covered most of the more than $2.5 million in medical bills over the course of treatment over the three months the Konczaks spent with Brooklin at the ICU at Lurie's in Chicago, but other bills racked up. Angela Konczak suffers from disabilities, and her husband lost his job after taking extended time off work to spend with his daughter when her life was in jeopardy.

The family also was displaced from their rental home in Sunnyland on short notice earlier this month. Several oxygen tanks needed for Brooklin's care were damaged in the process.

"It's just really been a big mess, to say the least," Konczak said.

The family found another home in Peoria after a landlord saw the Konczak's story and offered them a new place. Another person helped pay the first month's rent and the deposit for the new place. But the family is still struggling with all of Brooklin's medical expenses, including medications, transportation, and special equipment, as well as other household expenses.

The Konczaks have a GoFundMe set up for those who would like to help. Click this link to find out more or donate.

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Copyright 2021 WCBU. To see more, visit WCBU.

Courtesy Angela Konczak /

Tim Shelley is the News Director at WCBU Peoria Public Radio.