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Wednesday, April 17, 2024

Mother of cystic fibrosis sufferers holds fundraising efforts for her kids

She couldn’t breathe without him.

As children, William Durasky Jr. and his sister Michelle Durasky were both diagnosed with Cystic Fibrosis. Each day, they went through a regimen of breathing treatments together, which included taking turns strapping on a vest the size of a propane grill lid that pounded and compressing their lungs until they could breathe.

After 25-year-old William Durasky Jr. died of Cystic Fibrosis on Dec. 2, Michelle Durasky gave up on her treatments. She stopped eating. She felt like her life was over.

Her mother, Denise Durasky, wouldn’t allow her to give up. After 24-year-old Michelle Durasky started evaluations at Shands at UF for a double-lung transplant, Denise Durasky became desperate for a way to provide the treatments her daughter needs to live.

“After my son died, I thought I would follow,” she said. “But I needed to stay strong for her.”

Denise Durasky said her daughter complied with everything the doctors ordered to get a transplant. However, when she turned in her prescription, her insurance denied coverage.

Denise Durasky said she struggled to afford her daughter’s medication, which cost $3,000 per box.

"Coming up with the funeral expenses and everything took everything I had,” she said.

Denise Durasky said she always stayed home to take care of her children. However, after her husband was injured on the job as a state corrections officer in 2006, she became the sole caregiver for her family.

"We've always just done this by ourselves,” she said. "This is what's really hard for me is I've never had to ask for help."

Denise Durasky said she started contacting businesses for help in her hometown of North Port, Fla.

Sherry Jellerson, who works for an air conditioning company, decided to contribute after receiving an email from Denise Durasky about ways to reduce toxins in the air.

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“I think I'm inspired because she's so strong, but I don't think she realizes how strong she is,” she said. “And my heart just goes out to her.”

Jellerson said she knew people wanted to help, but many people do not know how.

One way to contribute is through a virtual walk Denise Durasky organized for her son at www.kindwalkforwilliam.com. She also created a website for donations at www.youcaring.com/medical-fundraiser/help-michelle-fight-cystic-fibrosis/54235.

Denise Durasky said her doctor and pharmacist have been writing letters to the insurance company since January requesting a change.

The most recent response looked hopeful.

Shelisha Coleman, a spokesperson for the Florida Agency for Health Care Administration, wrote in an email that Pulmozyme, the medication Michelle Durasky needs was on the Preferred Drug list, meaning it does not require prior authorization.

“The Medicaid prescription limitation is set at two ampules per day, meaning if a recipient is prescribed the treatment twice daily it would not be denied by Medicaid,” she wrote.

Denise Durasky said her daughter was scared after her brother’s death. However, she tries not to let fear control her life.

“She told me she feels like with the lung transplant her life is over,” Denise Durasky said. “I don’t want her to feel like that.”

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