Appreciating Life
The author Sheila Burke said, “There is no accidental meeting between souls.” Debbie and Stan’s love story began, ironically, while she was on a date with someone else. They were both living in Tucson, Arizona, but Debbie said she had a feeling Stan would be different.
“Sometimes, the person you marry — the one you’re meant to be with the rest of your life — just comes walking in the door,” Debbie said.
Stan was in the army, which meant they were constantly moving. Every three years, Debbie found the suitcases.
“It was like clockwork,” she said.
Since retiring, they’ve called Vero Beach, Florida, home. When she’s not spending time with her family on the beach, she’s a regular at Disneyworld.
“I like going just to see what the grandkids are doing,” Debbie said. “I’ll watch them play on the beach or play cards.”
Debbie’s retirement was interrupted in 2017 when she came down with pneumonia. She recovered within weeks, but her doctors discovered something worse: Debbie’s kidneys weren’t working.
“I got scared,” she said. “They told me I could die from it.”
Debbie’s doctors diagnosed her with atypical hemolytic uremic syndrome (aHUS). The condition leads to low levels of red blood cells and platelets, preventing the kidneys from operating properly.
“I told myself, ‘it is what it is,’” Debbie said. “I have to live with it.”
The doctors put her on a variety of treatment, trying to find one that would work. It took more than two weeks to find one that was effective.
“That treatment brought back my kidneys,” she said. “It’s been a godsend.”
When her previous financial assistance was no longer available, Debbie turned to an aHUS support group. They told her about The Assistance Fund’s (TAF’s) Atypical Hemolytic Uremic Syndrome Financial Assistance Program. The program provides financial assistance for out-of-pocket costs for all FDA-approved treatment for the aHUS, such as prescription drug copays, health insurance premiums, and incidental medical expenses.
“It was a big celebration once I was approved,” Debbie said. “I don’t know what people like me would do without TAF’s program.”
Debbie remains active in the support group, helping younger families navigate living with the rare disease. The disease is often discovered when children are young.
“We all pitch in as a community to provide reassurance,” she said. “We tell them it’s a new beginning.”
She credits her empathy to her nonprofit background where she worked for many years advocating for people living with developmental disabilities.
“That work really gives you an appreciation of life. It’s very rewarding,” she said. “I’m trying to help and pay it forward.”
