Maricopa mom holding out hope for kidney - Your West Valley News: Valley & State

Maricopa mom holding out hope for kidney

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Posted: Friday, February 19, 2010 12:00 am

CASA GRANDE, Ariz. (AP) — Just before Christmas, Ailisa Ureneck was preparing for the greatest gift she could hope for an operation that would end five years of a progressively worsening kidney disease.

But when a young family member — the only match found so far for Ureneck's O blood type backed out at the last minute, Ailisa had to go back to a waiting list with an increasingly desperate situation.

Now the Maricopa resident and mother of a daughter affected by both autism and attention-deficit hyperactivity disorder must wait and hope for miracle.

"It's tough because this makes her more scared," Ureneck said of her sixth-grade daughter, Megan. "The hardest part now is trying to deal with her while being gone three times a week for dialysis treatment."

The O blood type is great for being a donor, as it can give to any other types. However, it is one of the most rare and only those with the same blood type can potentially be a match for making the kidney donation.

Ureneck is afflicted with the same incurable kidney disease that affected former San Antonio Spurs All-Star forward Sean Elliott focal segmental glomerulosclerosis, or FSGS for short. But unlike Elliott, who received a kidney donation from his brother, Noel, which eventually allowed him to become the first professional basketball player to return to the court following a kidney transplant, Ureneck has come up empty in finding a donor within her own family.

Nearly all of them have been tested already, too, like Ureneck's mother, Terry Larsen, who came down from her home in Fairbanks, Alaska, to help Ailisa and her husband care for Megan.

"She's still really tired," Larsen said of her daughter. "We're trying to help her put on some weight."

Even with the dialysis treatments in Casa Grande, doctors told Ureneck that most diagnosed with this type of kidney disease don't make it much longer than 10 years after the disease takes root without a transplant.

Ureneck is entering her fifth year of battling the disease, having noticed something was wrong shortly after she moved to Maricopa when she began retaining abnormal amounts of water weight.

After dialysis treatments began, the bigger battle now for Ureneck is keeping weight on so as not to allow her body to be weakened even further.

Ureneck is now stranger to dealing with an unfair share of medical issues throughout her life as she was born with a form of cerebral palsy that left her deaf in one ear.

She deflects the worry for herself, however, talking about how her focus has been trying not to let the disease affect her daughter's well-being and happiness.

She's seen support too, via the donor network, which has a former FSGS sufferer call Ureneck to offer counsel and support.

"A woman named Barb talked to me about how she had to wait two-and-a-half years for her kidney," Ureneck said. "Once she got the kidney, she said, she felt never better."

Terry has gone as far as to list the need for a donor on Craigslist, but was discouraged when the calls she received focused primarily on how much she would be willing to pay for the organ.

According to the Donor Network of Arizona, 114 organ donors in Arizona gave up organs that benefited 300 recipients.

The biggest problem, however, is the overall lack of donors, despite a recent uptick in the past three years.

"Last year, seven out of 10 people who were eligible to donate their organs did," said Donor Network of Arizona CEO Tim Brown in a release. "With an increase of nearly 400 percent of people signing up to become donors in the last year years, it shows that more people in Arizona than ever before said yes to healing lives."

Ureneck is one of more than 1,900 Arizonans on a list waiting for a life-saving organ donation, with an average of 18 people of the 105,000 nationally on such waiting lists dying every day without the organ they needed, according to the DNA.

© 2014 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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