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Falling apart, then coming together

11:24 AM  Jun 21st, 2012
by Janet Filips ’77; illustration by MB Hopkins

Take the most elemental force:
love.

Mix it with
loss,
fear,
anger,
grief.

What results?

 

In the face of grave struggles, it is a miracle when human nature does not crumple but instead rises, compelled to make a difference. Here are stories of alumni who turned sorrow into service.

 

The witness

When Mary Lauterbach ’94 steps in front of a microphone or a member of Congress — as she has done many times, in many places, since January 2008 when a detective uncovered her daughter’s murdered body in a shallow backyard grave — she senses a hand on her shoulder. “I feel that it is the Holy Spirit speaking through me,” says Mary. “It is not me.”

Mary Lauterbach ’94, with Merle Wilberding (left) and Chris Conard ’87, who helped her champion for the rights of victims

However the words come, she speaks about the life and death of her daughter, Lance Cpl. Maria Lauterbach. How in May 2007, Mary had urged Maria to report that she had been raped by a Marine superior, Cpl. Cesar Laurean, at Camp Lejeune. And how Maria was belittled, minimized and further traumatized after she came forward with that allegation.

Bringing attention to sexual violence was not part of the Marine culture.

Twenty-year-old Maria was slain Dec. 14, 200

7. In August 2010, Laurean, her accused rapist, was convicted of first-degree murder and sentenced to life in prison.

The basics of the case may sound familiar; the media heavily followed the gruesome murder and trial, with varied and sometimes contradictory facts.

And as the tragic story became public, back in Vandalia, Ohio, Mary’s phone started ringing. She took more than 100 phone calls, from military women and a few men in different branches of service across the country who wanted to tell her what had happened when they had reported sexual assault. The common threads: They had no credibility with their superiors. Their truthfulness was questioned; their careers were derailed.

“It was like a broken record,” says Mary.

Mary was reeling from shock, grief and regret. Regret, because a month after the rape, an emotionally traumatized Maria had confided to her mother about what had happened. Mary had encouraged her daughter to report it, though belatedly, to her superiors.

Maria Lauterbach

“A month after the fact, Maria, no way you will get a conviction,” Mary remembers telling her daughter, “but get this guy a record.”

“It’s the worst advice I’ve ever given in my life,” Mary says. “I didn’t realize that I was telling her to do something dangerous. I feel responsible for her death in that.”

But as the phone rang with these callers, Mary saw that Maria’s experience was not isolated. She decided it was important to talk openly and frankly about Maria — her qualities and her imperfections — so she might be a vehicle for prompting improvements in the military’s attitudes about and actions after reports of sexual violence.

“At that moment in my life, I felt I was handed that mission. And it won’t stop, because I am being called to do that,” says Mary, an assistant director in donor relations at UD.

Hers and other voices are being heard in Congress and the Pentagon. A report issued October 2011 by the Department of Defense’s inspector general took a hard, critical look at Camp Lejeune’s response to Maria’s rape allegation. In December, Congress’ defense budget included measures for improved sexual assault prevention and response. And on April 16, Secretary of Defense Leon Panetta announced strong new measures to combat sexual assault in the ranks.

Officials, Mary says, have acknowledged that several of the changes are a direct response to Maria’s situation.

“I’ve always been a person of great faith,” says Mary, her voice in a near-whisper. “And I really believe Maria is in a better place. This brings meaning to Maria’s short life, and I am trying to extend that because her life has had an impact on more people and institutions than any of ours will, put together.

“Because of her, lives could be saved.”

 

The fundraisers

The pediatrician kept her office open after hours so Shaun Westfall ’02 and Alison Kelly Westfall ’02 could bring in 11-day-old Carson for yet another weigh-in.

Baby Carson was not gaining weight the way a healthy newborn should. And now the doctor had received abnormal results from one of the newborn screening tests.

In March 2009 in the quiet of t

he deserted office, the pediatrician broke the news: “Carson is testing positive for cystic fibrosis.”

“And we were, ‘OK, what’s cystic fibrosis?’ We had no idea what it was,” says Alison. “And she said, ‘The worst thing you can do is go home and look on the Internet about this.’

“So we went home and looked at the Internet,” Alison says, laughing, “and read all the different terms and about the short lifespan, and just started to freak out.”

But freaking out is not a way of life for Shaun and Alison, who met while running cross-country for UD.

Carson Westfall

Further testing had confirmed that Carson had inherited a particular gene defect from both of them. Shaun and Alison, it turned out, are among the 10 million Americans who silently carry a single defective, recessive gene. The faulty gene improperly regulates a protein involved in moving certain fluids through cell walls. With two faulty genes, Carson’s body produces thick, sticky mucus capable of clogging his lungs and leading to life-threatening lung infections. Without treatment, other thickened byproducts would obstruct his pancreas and stop natural enzymes from helping his body break down and absorb food.

But less than two months after Carson’s diagnosis — while Alison was on maternity leave and the couple was still trying to get their baby’s treatments under control — they jumped into a Dayton fundraising walk, benefiting the Cystic Fibrosis Foundation. With family and friends, they created a team, christening it Carson’s Crew.

Coincidentally, Ohio is home to a second Carson’s Crew: a family in a small northern Ohio town whose two children have CF. In fall 2010, Shaun and Alison drove up to attend a CF Foundation benefit that family had organized. They were moved — and inspired.

“The next day we were driving home,” Alison says, “and we said, ‘We could do that.’”

And they did, with help from their parents, a ton of friends and generous Dayton-area businesses. In late September 2011, 220 supporters showed up at the UD Arena Flight Deck for Flying Towards a Cure. The evening included a buffet, silent auction, basket raffle and video that Shaun made about a typical day with Carson — from his lung treatment regimen and diet to his tearing around the house like a typical, adorable 3-year-old boy.

The event netted $20,600, part of the $36,636.54 that Carson’s Crew has donated to the Cystic Fibrosis Foundation since May 2009.

Alison, a graphic design project manager, and Shaun, who works in information technology, are deep into plans for the second Flying
Towards a Cure, Sept. 15, again on the Flight Deck of UD Arena.

The couple’s motivation is simple. They want a cure. Ninety percent of donations to the CF Foundation go to research, Alison says: “And we both feel really strongly that we are seeing the benefits of that research really quickly, and that right there is an amazing thing. It pushes us to want to do more and give them everything we can think of to continue that research.”

This past January, the federal Food and Drug Administration approved Kalydeco, a drug that treats one of the less-common of the hundreds of cystic fibrosis mutations. Carson suffers from a more-common mutation, which would need two mechanisms corrected. The Westfalls are thrilled because clinical trials are under way that combine Kalydeco with a second drug.

The Kalydeco breakthrough, on the heels of their benefit, filled the Westfalls with a sense of purpose and accomplishment. And, says Shaun, they have been surprised and humbled by the number of individuals and Dayton businesses eager to join them in their efforts, even though CF is but one of many worthy causes in the world today.

Such support, he says, “makes the ‘work’ seem easy.”

 

The expert

At 12:30 a.m. one summer night in 1991, Gail Brown Callaway ’81 was running laps in San Jose, Calif., along with 30 other volunteers. As she rhythmically circled the track — her leg of the American Cancer Society’s fundraising 24-Hour Run, as the Relay for Life was called back then — a realization struck her.

“Something,” she thought, “isn’t right in my life.”

But what? An electrical engineer, Gail had gone to work for Hewlett-Packard straight out of UD, advanced to R&D, then to teaching field-service engineers. Her work had taken her to Australia and Hong Kong; her lifestyle allowed for fundraising activities such as the run. A problem solver by nature, she puzzled through that lingering thought as the summer wore on.

Gary ’79 and Gail ’81 Brown as children

Shortly after the run, her brother and only sibling Gary ’79 flew out from Columbus, Ohio, for a Bay Area visit. Gary had been diagnosed three years earlier with multiple sclerosis, a chronic, unpredictable disease that attacks the central nervous system. During the visit, Gail was struck by her brother’s physical struggles. He used a cane, he moved slowly and he had bladder issues that left her waiting a very long time outside the men’s room at a San Francisco Giants game.

That fall, HP presented a severance offer: A year’s salary for employees who left. With that news, Gail knocked on the door of admissions at San Jose State University and landed with the chair of the biology department. She wanted to study physical therapy, she told him, so she could become the family expert on her brother’s condition and a resource for helping him deal with increasing disability.

The chair shook his head. “You are a troubleshooter,” he told her. “You want to figure out what is going on with your brother? You should be a doctor.” He took out a pad and pencil and laid out the course of study that would turn an electrical engineer into a medical school candidate.

Six years later, in 1997, Gail graduated from the University of Cincinnati College of Medicine, chosen because of its proximity to her brother’s Columbus home. She did her residency in internal medicine and pediatrics. And now, in western Maryland, where she practices at Smithsburg Family Medical Center, she has a reputation as a primary care physician who is skillful with treating MS.

Gail thanks her brother for inspiring her to circle back to her high school love of biology and for her deep interest in MS. However, Gary was unable to keep an early promise he made to her, that his disease would not be fatal. In 2002, at age 44, he died from complications of MS.

Gail Brown Callaway ’81 and Lee Callaway ride to support MS research

With his death, Gail found a new cause: raising money to support research funded by the National Multiple Sclerosis Society. She started with the Walk MS, and then in 2005, Bike MS — a two-day, 150-mile ride that takes place on different routes throughout the U.S. Taking to her bike was fitting because, each summer day as kids, she and her big brother pedaled to the neighborhood pool in the Chicago suburb of Niles, Ill.

When Gail and her husband, Lee Callaway, train for Bike MS, “it helps me remember my brother,” she says. “Even though he’s not here anymore, it’s great motivation to help people after him — and hopefully find a cure so people don’t have to endure what he did.”

In her seven Bike MS rides — with 2012’s to come — Gail has raised $76,605, mainly from modest donations. Local companies provide items for a raffle, and for three months her medical office sells tickets for the drawing at $1 each. She asks friends via email or postcards to sponsor her.

And she organizes an annual Girls Night Out with an admission fee and activities such as manicures, massages and jewelry making. Professionals donate their serv

ices, Gail pays for the food and drink, and the gate all goes to the MS Society.

Back in her office, Gail is mindful of how she felt during her 14 years as the sister of an MS patient. She wanted things explained clearly to her. She wanted to know about resources such as information, equipment and family support. She knows too well how tough a serious disease is on loved ones.

As a lasting gift from her brother, says the engineer-turned-healer, “I have more compassion.”

 

 

The advocate

The details of the mishandled birth of Adam Susser, detailed in Florida Senate Bill No. 38, are such a horrifying case of medical negligence that reading them is almost too much to bear.

So it is enough to know that Gary ’79 and Judy Susser’s fraternal twin boys were born on July 10, 2000, in Coral Springs, Fla. After two weeks in neonatal intensive care, baby Brandon was fine; today he is a soccer-playing honor-roll student.

Adam, however, was severely oxygen-deprived. He is now wheelchair bound, uses a feeding tube and will forever require vigilant attention and help with basic daily activities. He can speak but a handful of words.

A trust established by the court provides an annuity that helps support his needs. But the reality remains for Adam that he is cortically blind; that means brain damage caused his vision loss. And the prolonged lack of oxygen during birth left him with quadriplegic cerebral palsy, a disorder caused by damage to the developing brain.

Judy Susser and Gary ’79 Susser with Brandon and Adam

“He can see with his heart and with his ears. So basically we surround him with love and affection,” says Gary, a consumer rights lawyer in Boynton Beach, Fla. “We were blessed with two special sons.”

In July 2004, Gary and Judy started a foundation in Adam’s name, “to promote awareness and to help others,” he says, “including the college students who want to help these
children.”

Adam, who turns 12 in July, has a heart-melting smile and thick dark hair. While he continues to live with severe deficits, he has made progress, thanks to good nutrition, education, enrichment activities and medical care.

At age 3, a month after a stem cell transplant in Mexico with umbilical cord blood cells from a U.S. lab, Adam gained a limited amount of vision. Whether it was by coincidence or cause-and-effect his parents cannot say for sure, but they are elated. His eye health improved further with experimental laser surgery at Washington University’s medical complex in St. Louis. Double hip surgeries and regular physical therapy have enabled him to walk by being placced into a custom walker. He attends special classes in public school.

A core value of the Adam Susser Foundation is to support students who choose careers devoted to assisting the developmentally disabled. The foundation funds scholarships for r

ecipients selected by Florida Atlantic and Florida International universities who are studying occupational and physical therapy, speech therapy and special education.

Over the years, the foundation’s mission has evolved into raising public awareness and public involvement for special needs children, advocating for legitimate stem cell research, and counseling other families, particularly against fraudulent treatments.

“My wife is very involved and speaks out, as do I,” says Gary. “But I attend more of the political events because I am not afraid to speak up, and I don’t give a rat’s patootie about crossing swords.”

At age 4, Adam appeared on Oprah — wheeled onto the set by his devoted twin — for a segment about medical malpractice and patient protection laws. In January, 60 Minutes broadcast an investigation of bogus offshore labs selling stem cell cures. The producers worked with Gary and Judy, who arranged for the first of four stem cell purchases.

When Duke University tested the cells, results showed that only 100 out of the 20 million purchased were still alive. The cost: $5,000 for each purchase, plus medical fees. Cash. Hope can carry a high price tag.

“Adam cuts across so many issues,” says Gary. “Stem cell research, medical malpractice, limitation on damages, children’s rights, rights of the disabled, education.”

The Sussers cannot recall a particular moment that prompted them to start a foundation. The need was as obvious as a hurricane. Their efforts are not a form of emotional healing. In fact, the couple’s sense of heartache and anguish has grown, says Gary, because the more he and Judy give, it “just gives more insight into what the need is, and how our society and our government have failed those in need.”

His parents and Judaism, he says, taught him a responsibility to help others.

“My wife and I don’t tithe per se,” Gary says, “but we give thousands of dollars to charities that deal with children. We love doing that. Everything you can think of, we get involved in.

“And we speak out, because there’s not enough being done for these kids, in our opinion. Because they are all innocents.”

 

The comforters

Domus Pacis Family Respite, a nonprofit program in the majestic mountains of Colorado, had many beginnings before it actually began.

In a way, the seed for Domus Pacis — Latin for “House of Peace” — was planted in 1990, during the year that Vince White-Petteruti ’73 drove between Chicago and Cleveland nearly every weekend to be with his ailing father and offer comfort to his mother. Later, Vince treasured the sense of peace he felt from having spent that time together.

After Vince’s dad died, there was the suggestion of his wife that they take a short break to cross-country ski in Colorado. When the couple arrived in December 1990, the ski town of Breckenridge had no snow. So instead, they looked at property. By the time Vince and Marylouise returned to their kids and corporate lives in Chicago, they had bought 10 forested acres with a view of Baldy Mountain and an intention to relocate there in retirement.

There was also the last-minute girls’ getaway to Vail, Colo., that Marylouise — known as “Duck”— organized in July 1997 with her two sisters and mother. Her mother had advanced lung cancer, and doctors warned this was her last opportunity to travel.

Duck learned two things from that Vail trip: First, it is very complicated to plan a medically safe, enjoyable vacation for someone seriously ill — yet it is critical that the honored guest see none of that effort. And second, that the joy from a relaxing week with family was long lived. Duck was heartened by the post-trip glow that her mother carried through her final days.

All those experiences melded together one sunny Colorado day in 2001. Duck and Vince, now retired, had just cleared the footprint for their mountain cabin. Vince left with their son Nic and daughter Sarah ’01 on a weeklong hike to maintain forest trails. Alone, Duck turned to the July sky and asked the Lord why they had been able to move here as planned, why their children were doing well, why she and Vince felt secure enough financially and emotionally to leave corporate America.

“And as soon as I let go of that thought,” Duck says, “it came back to me: ‘Do for other families as you did for yours.’ And I knew without a doubt, it was the respite.”

A family enjoying respite with Domus Pacis (Duck and Vince ’73 White-Petteruti, right)

That meant devoting their blessings to provide other families the happy memories of a week together, cradled by nature and caring strangers. Duck spent the rest of the day formulating the strategic plan.

When Vince emerged from the backcountry, she informed him of this revelation. They immediately called the architect, who redesigned their home to easily host visiting families and donor activities.

Their resulting nonprofit, Domus Pacis Family Respite (DO-mus PAH-chis), extends a free week in Colorado High Country for families in the throes of cancer, celebrating the end of treatment or in hospice care. Duck, a former senior vice president in global advertising, is executive director; Vince, a former steel industry executive, is treasurer. The community of Summit County, Colo., acts as volunteer pool and patron. Domus Pacis welcomed eight families in 2008 and has grown each year, to 58 in 2011 and potentially 100 this year. Patients have ranged in age from 8 months to 87 years, says Vince, and “we let the patient decide who ‘family’ is.”

Duck and Vince made good use of their business acumen in planning the practicalities. Through churches, synagogues and property managers, they have built a list of more than 80 available properties; many mountain vacation homes are normally occupied only a few weeks a year. More than 75 partners from Colorado’s medical and social work worlds provide the patient/family referrals, a process that reassures everyone from the IRS to donors.

Summit County businesses, residents and youth groups donate meals and recreation passes, fill welcome baskets and bake treats. In 2011, Domus Pacis was named Outstanding Nonprofit of the Year as part of the local Summit Foundation’s Community Collaboration Awards. “The project is also a way to teach philanthropy,” Duck says, “across all generations and economic levels.”

At times, it is tough to face so much suffering, especially when the patients are children. But Duck finds comfort in knowing that she and Vince recognized and met their life’s purpose.

Excerpts of heartfelt letters fill the Domus Pacis website. The landscape itself builds a sense of peace, says Vince: “Nature and God and the mountains, the lakes and the flowers: They just all contribute.”

 

Janet Filips ’77 has done thousands of interviews in her journalism career, which began at The Journal Herald and Dayton Daily News and continued in Portland and Eugene, Ore. She remains interested in hearing people’s stories because of human beings’ incredible capacity to persevere, inspire and amaze. This article made her feel extra proud to be a UD alumna. Janet is also author of The Luscious Cookbook.

 

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