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‘Always in motion’: Rock Falls woman with spina bifida donates organs

Rebekah “Becki” Annen of Rock Falls had a giving personality and excelled in bowling, writing and speaking about rights for people with disabilities.

So when Annen, 41, died May 24, her parents and siblings decided they knew what Annen would have wanted: To donate her organs, possibly for transplant.

Annen’s mother, Neva Annen, was hesitant at first. Becki had spina bifida, a birth defect affecting the spinal cord, complications from hydrocephalus and used a wheelchair. Neva wasn’t sure if Becki’s organs would be viable.

Joe Annen Sr., Neva’s husband and Becki’s father, believed Becki had expressed her wishes to be an organ donor before her death, but the family was still unsure.

“I was confused, because with my own health issues, I know I personally can’t be a donor,” Neva said. “So I was concerned for Becki’s situation.”

But Neva has her own connection to the organ transplant process. Two years earlier, she suffered heart failure, and her heart function was at a mere 15%, she said: “I was supposed to have a heart transplant.”

Neva wasn’t able to get to the level of medication needed for the transplant, but with lifestyle changes, medication and a pacemaker-defibrillator combination, her heart function returned to normal and she no longer needs a transplant.

“That played into (the decision),” Joe said. “That somebody would have had to donate a heart for her.”

“We decided as a family, this was probably what Becki would have wanted,” Neva said. “That’s what we needed to make it about.”

In August and September 2018, Becki suffered from double pneumonia and underwent gallbladder surgery, Joe said. On May 17 she re-entered Marshfield Medical Center in Eau Claire and was put on a ventilator but died May 24.

“We were grateful for one more year,” Neva said. “We didn’t know if it was going to be one more year or not.”

Becki’s was the first organ donation for Marshfield Medical Center, which opened in Eau Claire in the summer of 2018.

After the decision was made, hospital staff paid their respects When Becki’s family walked her from the intensive care unit to the operating room for the final surgery, physicians, nurses and other staff members gathered in the hospital hallways to say goodbye.

Forty to 50 people participated in the event that night — typically called an “honor walk” by hospitals — to pay their respects to Becki.

“It was so amazing,” Neva said. “The staff, as many as could get there, gathered as we were walking her down to the operating room and honored her.”

After testing, UW Health experts determined there wasn’t a patient who could accept Becki’s kidneys — but the organs would be used for medical research by an expert in Madison studying transplant drugs and kidney rejection.

“There’s still a blessing there,” Neva said. “They said, think of it this way, instead of two lives, she could be saving multiple lives.”

A spirited life

Becki, born in May 1978 in Eau Claire, surprised her parents and teachers even as a child.

When Becki was born, weighing just over three pounds, her hip began to expand rapidly and she had to undergo surgery, Joe said.

Doctors told Neva and Joe they wouldn’t say how likely the surgery was to succeed.

“They really didn’t believe she would ever come off the table,” Neva remembered. “But she came through that very successfully.”

A later surgery to repair Becki’s spina bifida was also successful, but it would limit Becki’s ability to use her legs, Neva said.

Before Becki turned 3, one doctor said she had a mentally disability, Joe said. But other doctors very quickly realized that wasn’t the case.

Other experts later gave Becki, age 3-and-a-half, an IQ test. Out of 50 vocabulary questions, she only answered one wrong.

“As things went on, we always said, ‘We know this kid’s smart.’ And she was,” Neva said.

Though Becki was nonverbal, she communicated using eye contact and several devices throughout her life, Neva said.

Becki was also the first child with major physical disabilities to be admitted to a mainstream classroom in the Eau Claire school district, according to Leader-Telegram records.

In preschool, Becki began in a class with children with mental disabilities — but she quickly decided she didn’t belong in the class.

One day, Neva was speaking to her mother on the phone — and saw Becki use the American Sign Language alphabet to sign her grandmother’s name.

Neva was shocked: “I didn’t teach her to sign. I knew how to sign … but I had no idea what was going on.”

Becki’s teachers denied teaching the children sign language. But they quickly realized that in the classroom, American Sign Language posters were hanging on the wall, with illustrations of hand signs for each letter of the alphabet.

“She was so bored in the class she taught herself how to sign the alphabet,” Neva said.

School administrators fought to get Becki into mainstream education, and she eventually graduated from Memorial High School in 1999 with a 3.8 grade-point average, Joe said.

“She absolutely loved school,” Neva said. “By the time she got to Memorial she was involved in (entrepreneurship club) DECA, writing classes, the newspaper at Memorial.”

As well as fishing and camping, bowling was another of Becki’s favorite hobbies. She competed on the Wagner’s Wheels bowling team and earned fifth place in state Special Olympics bowling, Neva said.

While one of Becki’s sisters attended UW-Stout’s vocational rehabilitation program, Becki spoke to the class, reading an essay about her life and the Americans with Disabilities Act.

“That really excited her, that people with disabilities were able to have availability and live where they could be out in society,” Neva said.

Neva remembers Becki meeting her favorite musician, Christian singer-songwriter Amy Grant, with affection: “Her reaction to learning, whatever that learning might be, was her eyes dancing and lighting up.”

A phrase from Becki’s favorite Amy Grant song, “Baby Baby (Heart in Motion),” is inscribed on her gravestone: “Heart in motion.”

“That’s because she was always in motion,” Neva said.

Donating locally

In addition to Marshfield, patients have donated organs or tissues at Mayo Clinic Health System in Eau Claire, HSHS Sacred Heart Hospital in Eau Claire and HSHS St. Joseph’s Hospital in Chippewa Falls.

In 2018, six people donated a total of 23 organs at Mayo Clinic in Eau Claire, said Dan Lea, Mayo senior communications specialist. The hospital averages six to eight organ donors per year, Lea said.

In the fiscal year 2018, four people from Sacred Heart donated organs, said Michelle Willcutt, a Sacred Heart ICU nurse and member of the hospital’s organ donation committee.

“It does fluctuate quite a bit, and that’s simply because not very many people are eligible to be donors,” Willcutt said. “A lot of things have to happen in a (specific) manner that makes them eligible.”

Eligible donors need to be in an ICU on a ventilator to be able to donate whole organs, Willcutt said.

For people who didn’t make their wishes known during their life, families often have a difficult decision to face.

When people enter the ICU, families usually need emotional support when making the decision whether or not to donate their loved one’s organs, said Dr. Eric Espinoza, a critical care physician at Marshfield Medical Center in Eau Claire.

“Patients in the ICU are not able to be verbal … they might not be able to express their concerns, questions and goals of care,” Espinoza said. “It’s a challenging situation for family members. We put a heavy burden, emotionally speaking, on top of the knowledge their loved ones may pass away.”

Eau Claire County is high in registered organ donors, however, with 63.7% of county residents registered as donors through the Department of Motor Vehicles, Willcutt said.

“I do think it’s a really good testament to the compassion of the people of this county,” she said. “We’ve seen such an increase in the number of people who are registered donors.”

GOP lawmakers' attorney agrees to confidentiality deal

BEAVER DAM — Faced with a tight deadline, the Republican co-chairs of the Wisconsin Legislature’s budget committee said Thursday that their attorney will sign a confidentiality agreement requested by Democratic Attorney General Josh Kaul to end a stalemate over lawsuit settlements.

Republicans passed a law in December’s lame-duck legislative session that gives the Legislature’s GOP-controlled budget committee the power to approve settlements that Kaul’s office reaches on lawsuits. There are at least 15 pending lawsuits that could net the state millions of dollars in settlements that are in limbo as Kaul and lawmakers squabble over how to proceed.

Kaul met behind closed doors with the committee on Tuesday and asked lawmakers to sign confidentiality agreements so they could discuss the lawsuits. The lawmakers refused, despite a warning from Kaul’s Department of Justice that the state must act by Friday on a “very urgent matter of tremendous importance to the state.”

On Thursday afternoon, less than 24 hours before the deadline, the Republican co-chairs of the committee said they had hired an attorney who would sign the confidentiality agreement. Kaul did not immediately respond to messages about whether that would be sufficient.

“This action should resolve the Attorney General’s confidentiality concerns, and he should send over all of the relevant settlement information for review,” committee co-chairs Sen. Alberta Darling and Rep. John Nygren said in a statement. “The Committee stands ready to review and approve any settlements that are in the state’s interest.”

They also said that Kaul’s demand for confidentiality agreements to be signed was “an obvious effort to undermine the law by delaying the committee’s work.”

Sen. Jon Erpenbach, a Democratic committee member, said he was never consulted about the hiring of the attorney and didn’t know about it until Republicans announced it in a press release.

The attorney hired is Andy Phillips from the Milwaukee law firm of Von Briesen.

“This lawyer does not represent Jon Erpenbach because Jon Erpenbach had no input,” Erpenbach said.

Kaul said that reviewing confidential information and keeping that information private “is part and parcel of the review of settlements.”

Speaking to reporters earlier Thursday, Democratic Gov. Tony Evers said he wished the Legislature would repeal the law requiring committee approval of lawsuit settlements, saying the disagreement over confidentiality agreements shows it isn’t workable.

“If I was a state representative, I wouldn’t sign that thing because you’re responsible for openness and transparency,” Evers said of the confidentiality agreements. “That should be left to the attorney general.”

Evers said Republicans who stand in the way of Kaul settling lawsuits on behalf of the state need to figure out a resolution so Wisconsin does not lose millions of dollars.

“It’s frustrating and hopefully we’ll figure this out,” Evers said following an economic development announcement in Beaver Dam. “We need to have adults come to the table and figure it out.”

Evers said Republicans were trying to constrain Kaul’s authority to settle lawsuits by passing the law requiring lawmaker approval. That action, Evers said, put “the people of Wisconsin in this weird box.”

Wisconsin officials say gray wolf population seems stable

MADISON, Wis. — Wisconsin officials say the gray wolf population may have stabilized after nearing extinction decades ago.

The state Department of Natural Resources says it counted from 914 to 978 wolves in the year to April 2019. The agency says that is a 1% increase from the last count.

Wisconsin Public Radio reports that state data shows there were just 25 wolves in Wisconsin 1980.

A federal judge placed the gray wolf on the endangered species list in 2014. The federal government this year launched an effort to delist it.

Adrian Treves is a professor of environmental studies at the University of Wisconsin-Madison. Treves says Wisconsin hasn’t been transparent with its count and that the federal government shouldn’t rely on the state’s numbers.

DNR stands by the count.

AmeriCorps putting $605K into Eau Claire area

The Eau Claire area is getting about $605,000 from a federal agency toward funding three community service programs, according to a news release from AmeriCorps.

Coming from the Corporation for National and Community Service, the funding is for programs at UW-Eau Claire and the Western Dairyland Economic Opportunity County that are made possible through the labor of AmeriCorps members:

• Blugold Beginnings — A university program that gets youth interested in science, technology engineering and math.

• ECLIPSE — One-on-one language, literacy, social interaction and other skill-building lessons through the university for 3- to 5-year-old children who are "at risk" or from low-income families.

• Western Dairyland's Chippewa Fresh Start YouthBuild — Volunteers building homes for income-eligible families while also working toward getting their high school diplomas or reaching career goals.

Statewide, Wisconsin received $7.1 million in federal funding for AmeriCorps, a volunteer program with more than 900 members in the state who each will receive about $6,000 for their service, which can be used for college expenses or to pay off student loans.

AmeriCorps is leveraging the federal dollars to get an additional $5.9 million for the programs in Wisconsin — $480,000 of that for Eau Claire County — from the private sector, foundations and other sources.