WALKER — When Anya Maciulewski was diagnosed with a brain tumor at age 2, she wasn’t expected to live six months.

She not only beat those odds, she overcame two more bouts with cancer at 11 and 12. She learned to walk and talk again after a quarter of her brain was removed, leaving her right side paralyzed.

Now 27, with lungs so damaged she barely has any breathing room, Maciulewski is again hoping to beat the odds. On Sunday, she will move with her mother to Pittsburgh to wait for a double-lung transplant at the University of Pittsburgh Medical Center.

“I’ve been waiting and waiting, and now it’s like it’s going to happen or not,” Maciulewski said. She spoke in a soft voice as she sat in her living room, connected by a 50-foot tube to her life-saving oxygen supply.

“I’m trying to stay calm because it doesn’t do any good to get upset. I don’t try to think too far ahead because I don’t know what’s going to happen when.”

As a result of her cancer treatments, Maciulewski is a petite 4-foot-11, having stopped growing in the third grade. But she radiates a calm optimism and powerful courage that are an inspiration to her family and friends.

HOW TO HELP

To donate to the fund to help Anya Maciulewski, click here to go to her page on

the National Foundation for Transplants’ website.

A group is working to raise money to help her handle the housing, transportation and medication expenses involved in the transplant.

“Anya is so sweet. She just wants to live,” said Jen Betteridge, one of the fundraiser organizers. “She has a lot on her plate, and it is just heartbreaking.”

The group is seeking donations through the National Transplant Foundation website and is planning a benefit in May.

Maciulewski’s mother, Nancee, has quit her housecleaning jobs to make the move to Pittsburgh with Anya. She is looking for an apartment to rent near the medical center where they will live while waiting for the transplant – which is expected to take six months to two years.

And after the operation, they will stay for several months of follow-up treatments.

25 years of overcoming challenges

The Maciulewskis are hoping the lung transplant will be just one more chapter in a 25-year story of medical miracles.

Anya, the oldest of Tom and Nancee Maciulewski’s three children, was diagnosed in 1987 with a malignant brain tumor, a mixed glioma, when she was 2.

She underwent surgery to remove the tumor, which was in the front, left area of her brain. Her parents were warned that the surgeons would likely not be able to remove the entire tumor, and that Anya might end up paralyzed and unable to speak or hear.

After the operation, the surgeon came to the waiting room and told them he had removed the whole tumor. He said, “You better thank your God the tumor was not where the angiogram located it the day before,” Nancee recalled.

In recovery, Anya called for her mother, showing her speech and hearing were unaffected.

The surgery was followed by a year of chemotherapy and six weeks of radiation treatments to Anya’s brain and spine. She remained cancer-free until she was in fifth grade.

In math class one day, Anya felt numbness and tingling in her right hand, which reminded her of the symptoms she had felt years ago. She went to the school office and asked to call her parents because she thought she had another tumor.

She was right. Anya underwent a second surgery at Helen DeVos Children’s Hospital. While still undergoing chemotherapy treatments the next year, she again felt she had a tumor.

She underwent a third operation at age 12 and, this time, the surgeon removed a quarter of her brain in an effort to prevent the cancer from returning, Nancee said.

Anya’s right side was paralyzed, and she spent eight weeks at Mary Free Bed Rehabilitation Hospital learning how to walk and talk and regain as much function as possible.

The recovery period was difficult for the entire family, Maciulewski said. She had a younger brother and sister at home, but her mother was at her side every minute.

“She is the most courageous person I have ever met,” Nancee said. “She fights to the end.”

After missing nearly two years of school, Anya started eighth grade. The treatment slowed her processing and affected her short-term memory, but she received special education help and graduated from high school in 2003.

Along the way, Anya helped others through church mission trips, traveling to Atlanta, Mexico, Romania and Ecuador. She began working at a nearby store, Just Bargains, and later provided day care for the store owner, Jen Betteridge – who is now helping to lead the fundraiser.

Maciulewski was in her 20s when her lung problems surfaced. She was diagnosed with asthma six years ago and began to use an inhaler.

Two years ago, she went to the hospital because she had problems breathing and was diagnosed with interstitial pneumonia. She also had fibrosis in her lungs, which her mother believes was caused by the chemo and radiation she received when she was younger.

Maciulewski was put in a drug-induced coma and was on life support. She recovered, but underwent a second episode of life-threatening pneumonia in October.

On the doctors’ recommendation, the Maciulewskis began looking into a double-lung transplant.

“If she gets another pneumonia, it will easily be her last chapter,” said Dr. Ronald Hofman, the pediatrician who has cared for her all her life. “She barely made it through that last one.”

Hofman said Maciulewski has faced an extraordinary number of challenges with a positive attitude.

"She’s totally upbeat. There is no bitterness,” he said. “It’s amazing.

Maciulewski’s transplant is especially complicated because she is so small: She needs child-sized lungs. The University of Pittsburgh Medical Center was the only place her family found that was willing to perform the transplant.

On Sunday, Nancee and Anya Maciulewski will leave for Pittsburgh, accompanied by her dad and her 25-year-old brother, Alek.

When she is within a four-hour drive of Pittsburgh, Maciulewski will be added to the transplant list.

Although she knows many more challenges lie ahead, Maciulewski said she is eager to face them. Why? “So I can have a life again. So I can go places and do more things.”

A grin crossed her face. “So I can go shopping,” she said.

“Despite everything else, she has led a full life,” her mother said. “She has a zest for life and wants to live her life and tell her story.”

Email Sue Thoms at sthoms1@mlive.com and follow her on Twitter at twitter.com/suethoms



