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Neighbors rally to help Millvale woman who's sick, struggling, far from family
Wednesday, March 03, 2004

Charity Stamps' visit with her half-sister from Oklahoma was a bittersweet reunion made possible by the kindness of strangers.

Stamps, 25, of Millvale, has a rare genetic condition in which tumors grow throughout her body.

When the people who run North Hills Community Outreach learned that Stamps has no family in Western Pennsylvania and was struggling to survive financially while fighting her life-threatening disease, they stepped in to help.

The visit between the two sisters during the past week was only one of their acts of kindness.

Stamps was diagnosed with Von Hipple-Lindau disease when she was 17. Considered to be rare, the disease affects about 7,000 people in the United States. In her father's family, however, it's quite common. Among her relatives who have had it are her father, who died of the disease at age 36, and her grandmother, who died of it at age 27.

As a child, Stamps knew there was a chance that she also would develop the disease.

"My father died four months before I found out that I had [the disease]," Stamps said from her hospital bed last week at UPMC Shadyside. "He always felt guilty knowing that I might get it. He was young when he married my mother and didn't think about the repercussions of having a baby. I'm glad he died without knowing that I had it, too."

Before the day in February 1995 when her eye doctor noticed a cyst in her left eye, a common symptom of the disease, Stamps was a healthy, active teenager living in Oklahoma.

"I was the teacher's pet and captain of the debate team. I was all about school."

A few months later, she was in a diabetic coma for a week, another common side-effect of the disease.

It became painfully clear that Stamps was in for the fight of her life, and the pain put an enormous strain on her relationship with her mother.

"She can't deal with the fact that I'm sick," Stamps said as the reason she rarely speaks to her mom, who lives in Oklahoma. "She feels guilty and responsible for my illness. I know she loves me and cares, but she can't show that without breaking down."

Stamps at first tried to live her life normally, attending the University of Central Oklahoma, until she had to drop out because she was too ill to go to class.

Soon after, at the age of 19, Stamps moved to Pittsburgh with a friend in an effort to find better medical care. "I stayed here because the doctors are so good," she said.

For her first five years in Pittsburgh, Stamps was able to hold down two jobs -- as a telemarketer and in a restaurant -- and last summer she returned to Oklahoma to visit her 21-year-old half-sister, Rebecka Harris. But soon after Stamps returned to her apartment in Millvale, her symptoms grew worse and the hospital became her second home.

"[The doctors] found a massive cyst on my pancreas, there are cysts on my gall bladder, my lower intestines, and a tumor on my kidney," Stamps said. The pain is so debilitating that she needs medication just to get through the day.

Unable to go to work, Stamps lost both of her jobs. In an effort to get enough money to pay for insulin, she walked into the North Hills Community Outreach's office in Millvale to see whether she could get a loan and was immediately embraced by caseworker Melissa Lazarra.

Lazarra took her to the food pantry and helped her figure out how to manage the rest of her responsibilities.

"Our function at the outreach is to feed people, help them find employment and locate other resources," said Carol Ranallo, Millvale manager for the outreach program. She said she typically doesn't get involved with individual cases, but Stamps' situation tugged at her heart.

"Charity was denied Social Security and disability and has no income," Ranallo said. "Her disability has been put on appeal, and she is eligible for welfare, but we haven't been able to keep her out of the hospital long enough for her to meet with the attorney. That's why she has no money.

"We're supposed to be advocates and distance ourselves, but this is one person we can't help but get personally involved with," Ranallo added. "And because of her situation, this gal gets depressed. She doesn't have a good quality of life, and that gets to you. She started talking about how close she is to her sister in Oklahoma, and how she would like to see her around Christmas, so we decided to call Rebecka on the q.t. and see if she would want to come for a visit."

The week after Thanksgiving, Ranallo secretly began looking for a way to make the visit happen. She talked to members of the Millvale Rotary and started to form a plan. "This is above and beyond, but we weren't sure Charity would see another Christmas, so we did what we could to make it happen."

Christmas came and went without a visit arranged, but when Dorry D'Amico, the wife of a Rotary member, heard about Stamps' plight, she called a friend who used to work for an airline. Soon, a round-trip ticket from Oklahoma to Pittsburgh was provided by an anonymous donor.

"Dorry had never met Charity, but she is responsible for her sister coming in," said Ranallo, who picked Harris up at the airport last Wednesday.

Harris, who was able to visit with her sister until yesterday, said she saw a big difference in Stamps' demeanor.

"She's happy and upbeat -- like she was when we were kids," Harris said. "She's been really lonely, but she stays [in the Pittsburgh area] because she thinks she's getting better care here. We talk on the phone every day, and she was so depressed, it was hard not to tell her that I was coming for a visit."

Although the sisters had to spend half of their visit in UPMC Shadyside, they were able to celebrate an early birthday for Stamps, surrounded by her surrogate family. On the last night of Harris' visit, they ate a dinner donated by Stefano's Restaurant in O'Hara.

Dr. Adam Sohnen, of Pinnacle Internal Medicine Associates at UPMC Shadyside, said that Stamps suffers from what he calls "labeling in medicine."

"Because she's young and attractive, no one sees how terribly sick she is. When she comes into the hospital needing pain medication, some [health care workers] assume that she's an addict," he said.

"She's had a long and complicated history," he said. "In the last decade, we've seen thousands of patients, and she's the only one we've ever seen with VHL."

Sohnen said one option would be for Stamps to get hospice care. "Hospice would help her in a number of ways because it's a powerful label. It would give her leverage and credibility," he said.

"Charity's in a precarious rock and hard place because all the programs seem to be for the elderly, and when you're 25, you can't go to the Department of Aging," said Jane Skerl, a liaison for Trinity Hospice of Forest Hills. "Medicare can't pay for your bills until you're disabled for two years."

Skerl takes care of Stamps' year-old Chihuahua, Gobbler, when Stamps has to go into the hospital. "The fact that Gobbler's the only thing she has in this world just wants to make me cry," Skerl said. "I just want to take one worry away from her. I don't know how she does it."

Volunteers at North Hills Community Outreach help Stamps by cleaning her apartment; taking her to doctor appointments; donating money, clothing and other items; and lending a sympathetic ear when she needs one.

"We are working with Thrivent Financial for Lutherans community services team," Ranallo said, "and they've agreed to match any dollar donated up to $5,000 for Charity to pay her living expenses, utilities, transportation, back payments sand food."

The Millvale Rotary also has started a Charity Stamps fund and has raised $150 from its annual Monte Carlo fund-raiser.

"One day she sat there, and tears were coming down her face, and she told me, 'I'm not afraid to die,' " Skerl said. "She desperately needs a support system because no one knows how long she'll be with us. Since Rebecka's been here, she seemed like she was rallying, and that was a good thing. She even had future plans about her apartment. I would like to see her have some peace while she's alive."

Stamps is grateful for everyone's efforts on her behalf.

"I'm glad to find that there are nice people in Pittsburgh," she said.

"These people have meant so much to me."

Donations for Charity Stamps' matching fund can be made to North Hills Community Outreach, 1975 Ferguson Road, Allison Park, PA 15101. Donors should write "Charity Stamps" in the memo section of their checks.

First published on March 3, 2004 at 12:00 am
Jill Cueni-Cohen is a freelance writer.
Correction/Clarification: (Published March 10, 2003) Stefano's Ristorante is in O'Hara. Its location was reported incorrectly last Wednesday in a story and caption about Chef Stef of the restaurant donating a meal to Charity Stamps, of Millvale.
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