The Compass: Official Newspaper of the Catholic Diocese of Green Bay
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March 3, 2000 Issue
Local News

From one brother to another

Oneida family sticks together to fight against a rare, fatal bone disease

By Joanne Flemming
Compass Correspondent

Peter Berkel believes God has at least one purpose for his life: donating bone marrow for his brother Paul's transplant next week.

Paul, 22, has sanconi anemia, a rare genetic disorder that causes bone marrow failure. An older brother, Mark, had a bone marrow transplant in 1991 when he was 17. He died two weeks later, possibly because of an infection, but not from problems with the transplant.

Although Mark's illness and death have brought the family hardship - particularly financially - these events have also brought them closer together and have deeply strengthened their faith, Paul said.

Fr. George Lenzner, their pastor at St. Joseph Parish in Oneida, attested to this strength.

"Their faith is very real and alive," said Fr. Lenzner, who celebrated a healing Mass for the Berkels, their relatives and friends on Feb. 18. "We are hopeful and trust that physical healing will happen. I think spiritual healing has already happened. There is a peace and calmness I think that results from a comfortable and genuine trust in God."

Mark first became ill in 1985 at the age of 10. His parents, Mary and Marv, found bruises on his legs and he tired easily - both symptoms of leukemia. Initially, the oncologist thought he might have aplastic anemia. But, 4 years later, tests at Fairview University Medical Center in Minneapolis found the sanconia anemia.

Paul said this disorder was not considered when Mark was first examined because 15-20 years ago, doctors thought it occurred only in persons with birth defects. Now doctors know it develops when both parents carry a recessive gene for it, as Marv and Mary do.

All of their other children - Jim, Kathy, Sarah, Joe, Paul and Peter - were tested. Paul and Sarah came back positive. Joe and Peter were found to be perfect sibling matches for bone marrow donations. Joe served as Mark's donor.

Sarah may have a lesser chance of developing it, Paul said, because one symptom is chromosomal breakage, which increases the likelihood of bone marrow failure and cancer. Sarah's breakage is 20% compared to 85-90% for Paul. In a normal person, it is 3-5%.

Since Paul learned he had sanconi anemia, he has had complete blood counts done every four months. Progressive drops in the count, he said, would indicate his bone marrow was starting to fail. He had a bone marrow biopsy in October after such drops occurred. It showed that the marrow was slowly failing and becoming aplastic and leukemic.

Paul and his parents went to Minneapolis for a week of tests in preparation for the transplant, most likely on March 7. Peter, 20, is the donor. The younger the donor and the recipient, the better the chance of success, Paul said.

"I'm the one who will save Paul's life because God ... created me for a specific purpose. This is probably one of the purposes of why I'm here," Peter said.

Paul and Peter are both students at Silver Lake College in Manitowoc. Paul is majoring in theology and minoring in philosophy. He wants to study for the priesthood, possibly in a religious order.

He wants to be a farmer-priest, said his cousin, Jessica Koehler of Oneida. The Berkels have a dairy farm outside Oneida and he loves the priesthood and farming, she said. "If he could have his ultimate dream, he would have cows, too."

Peter's major is religious studies. He wants to be a youth minister after graduation and is also considering the priesthood.

Both young men say that the family's struggles with sanconi anemia has strengthened their faith.

Paul said that he has had to learn to trust God. "I learned that I was not in control as much as I thought. One of the sisters at school told me I was never in control in the first place. God has always been in control," he said.

Throughout the day, he tries to express his trust with short prayers, such as "Jesus, I trust in You" and "Sacred Heart of Jesus, I trust in You."

Fr. Lenzner said both Paul and Peter put their faith into action as active parishioners. Paul said he hopes his transplant will give others with sanconi anemia the courage to follow his example. Peter hopes to use his experience as a donor to inspire others when he becomes a youth minister.

Finances remain a concern. Health insurance will cover 80% of the transplant. The family has applied to Wisconsin Medicaid, but don't know what help they will receive.

Paul could be in the hospital up to 35 days after the transplant and will remain in Minneapolis for 100 days. During that time, the family will have living expenses. Later, he will have regular checkups in Minneapolis, meaning additional expenses for him and his caregivers. Plus, the family will lose income because his father will need to hire someone to do the farmwork Peter and Paul do, and Mary will be off her jobs at St. Joseph Parish and St. John in Howard while she stays with him.

Jessica has organized fundraisers for her cousins, raising $10,000 from family and friends.

Donations can also be sent to: Paul Berkel Transplant Fund, Associated Bank, P.O. Box 19006, Green Bay 54307.

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