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Bob Kerr: Her desire to help ill daughter poses a new challenge

01:00 AM EST on Sunday, November 30, 2008

Alex Ferreira’s routine used to include an early-morning trip to the gym. She used to grow a substantial part of her own food. She avoids sugar and salt and doesn’t go near alcohol or cigarettes.

When those who know of such things put together the profile of the perfect organ donor, she would seem the donor from heaven. Her blood type is O positive, which makes her a universal donor.

But she can’t donate. She learned she wasn’t the perfect donor, after all, when she signed up to give a kidney to her daughter Carra.

“That’s when they found out what was wrong with her,” says Carra, who is suffering from kidney failure and on a transplant waiting list.

Last Monday afternoon, Alex settled into a couch at the very nice digs of her boss, John Skeffington, in Lincoln. And she talked about illness and family and how the two can cross over each other more than once.

“I guess I’m still in shock,” she said. “I’ve always liked to keep my life in order.”

Just a few weeks ago, there did seem a certain order in the way things were unfolding. Carra Ferreira, who has been dealing with serious health problems since she was diagnosed with lupus when she was 16, was found to have only 16-percent kidney function.

“The doctors wonder how I function as well as I do every day,” said Carra, who is 30.

She probably faces dialysis in the near future. But she needs a transplant. And when it comes to organ transplants, family is always at the top of the list of prospective donors.

That’s when the first medical surprise hit the Ferreiras. When they went to be tested, a rare blood-clotting disease eliminated some family members from the donor list.

But when Alex went to be tested, she was found to not have the disease.

“They told me I’m healthy,” she said.

One doctor even described her as the “perfect specimen.”

So the surgery was scheduled. The mother would give the daughter a kidney and a future.

During final screening at the transplant clinic at Rhode Island Hospital last month, Alex was told she would need to go for some additional x-rays. After the x-rays, a doctor sat her down and told her she couldn’t give her kidney to Carra. Spots had been found on her pancreas and gall bladder.

“I asked ‘Why wouldn’t I have been sick?’ I said ‘What do I do?’ ”

Instead of being scheduled for donor surgery, she was scheduled for cancer surgery Oct. 29. Her gall bladder and part of her pancreas were removed.

It was very hard, she said, to tell her daughter that what seemed the perfect match wasn’t.

Within this story of a family on a medical roller coaster, there is also a story of human generosity. There is Skeffington’s insistence that Alex move in with him and his girlfriend in Lincoln while she recovers. Skeffington owns bars and clubs in Providence, and Alex has worked for him as a bartender and manager for 15 years.

“She doesn’t give herself enough credit,” says Skeffington. “The employees at the clubs, they’ve called, sent her flowers.”

Those fellow employees are, says Alex, like family.

The other shot of generosity came from Dr. Kevin Charpentier at Rhode Island Hospital. He looked at his patient and her situation and performed the surgery at no charge.

“It’s incredible,” says Alex, who says she can’t afford health insurance. “It’s hard to know what to say.”

She is 49. She has been told the prognosis is good. The years of taking good care of herself made a difference. But there are months of recovery ahead, months in the soothing calm of Lincoln, where she is able to do some cooking and baking.

“I’ll be 260 pounds,” said Skeffington, patting his mid-section. .

She was invited to the Skeffington family dinner on Thanksgiving, but she didn’t feel up to it. She prepared a pile of food to send along and chose to spend part of the day by herself.

Carra Ferreira continues to wait for a donor who can give her a kidney. Her blood type is A-positive.

bkerr@projo.com

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