Family faces rare disorder with faith

 

Aurit Update

Two weeks, Scott and Sarah Aurit of Omaha were on Spirit Mornings to share their story of faith and their family’s struggle with a rare children’s digestive disorder (see the previous blog). At the time, they were working on getting a legislative bill passed that would require insurance companies to help pay for the coverage of the specialized formula the three Aurit children and others must take for nutrition.

 

It’s been a couple weeks of highs and lows for the Aurits, but yesterday, Nebraska lawmakers finally advanced the bill, which also included mandating insurance coverage of intensive autism therapy and oral cancer drugs. The measure won first-round approval Wednesday after several failed attempts to attach it to other bills in the final days of this year’s session.

 

The proposals eventually were amended into Legislative bill 254 after its original contents were removed.

 

“It felt like we were witnessing a miracle yesterday to see that the bill passed with a 41-0 vote! Praise, God!” Sarah Aurit said. “It was inspiring to watch the senators come together and come up with another plan in an effort to help the sick and the young.”

 

The formula proposal initially was an effort to require insurance coverage of specialized formulas, but supporters compromised on legislation mandating the state to pay for the formula for children who take it orally. The cost would be about $250,000 per year.

 

Currently, Nebraska’s Medicaid program covers the formula for people with feeding tubes. And the Women, Infants and Children program covers it for low-­income children who take it orally. But there are few coverage options for others who take it orally.

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For Scott and Sarah Aurit and their children, there’s no such thing as a “normal” meal in their Elkhorn home.  

 

Their children – J.P., 11, Gianna, 9, and Lizzie, 7 – have a newly discovered gastrointestinal disorder called eosinophilic esophagitis, which makes it painful and harmful to eat most foods. 

 

With the disorder, their white blood cells, which normally fight infection, identify food proteins as parasites and attack them and in turn damages the stomach. Symptoms can resemble food allergies or the flu, with severe vomiting, diarrhea, abdominal pain and insomnia.

 

Each Aurit child has a number of real foods they can eat. But they receive most of their nutrients through an elemental formula that’s served powdered or premixed and artificially flavored. Gianna can drink it, but J.P. and Lizzie take the formula through feeding tubes implanted in their abdomens.

 

The formula is necessary, and expensive. 

 

For the Aurits, the cost of the formula is comparable to a mortgage payment … times three.

 

An insurance person once even suggested they legally divorce to qualify for government aid to pay for this formula.

 

The Aurits were on Spirit Mornings last week talking about their effort with other Nebraska families to pass Legislative Bill 397, which would allow coverage of the formula regardless of how it’s consumed. Currently, some insurers will only cover the formula if it’s tube fed, not orally fed.

Discovering the disease 
 

As a baby, J.P. had several food allergies – and that’s what doctors initially said they were … food allergies. It wasn’t until they want to a specialist at Children’s Hospital in Omaha that J.P. was diagnosed with EE.

 

When Gianna was born a few years later, she seemed healthy, so Scott and Sarah didn’t have her tested. Lizzie, however, had immediate food aversions – by far the worst of the children – but she couldn’t be tested until she was two-year-old. After testing positive for the disease, Gianna was tested, too. And shockingly the results were the same. 

 

The disease is rare to begin with so to have it with all three children is extremely rare, said Sarah, who also has a lesser-severe form of EE. 

 

She takes steriods to alleviate her symptoms. 

 

Eventually the family began receiving care from the Cincinnati Children’s Hospital, and pulled out food from the children’s diets. But nothing helped. So the doctors recommended the children stop eating all food, which was very devastating, Sarah said. 

 

“I mean, how do you tell a five-year-old that they are no longer able to eat?” she said.

That’s when the kids transitioned their nutrition to this elemental formula.

That’s their baseline, Sarah said, the building block. Each child tries one food at a time after every three foods receives a scope to make sure no damage has been done internally, she said. 

 

Scott and Sarah said they initially hid food and not eat in front of the kids, but stopped because they didn’t want their kids to be afraid of food. Now each child can eat certain foods, and Sarah has learned to be creative when it comes to cooking, the family can enjoy dinner together.

 

“We’ve made a lot of progress,” Sarah said.

 

Living with the disease
 

In many ways, the Aurit kids are like most kids. 

They love sports, Gianna likes to write songs, and J.P loves legos.

 

But in many ways, their disease also sets them apart. 

Sarah said her kids sometimes feel left out because they can’t eat the birthday treats their classmates bring in at Fire Ridge Elementary in Elkhorn or the snacks served after a sporting game.

 

Even at Mass, it can be an issue, she said. J.P. and Gianna, who both have received first Communion, aren’t able to consume the hosts. Instead they receive the consecrated wine, which isn’t always available at every Mass.

But the Aurit kids still get to participate in fun activities. 

On Halloween, for instance, the kids went trick-or-treating. But instead of eating their candy, their parents bought it from them and took the kids toy shopping with the money they earned. Sarah gave the candy to local dentist who shipped it to soldiers overseas.

Two years ago the Aurits took their first big family vacation. They chose Disney World specifically because Disney parks accommodate people with food allergies, Sarah said. Before they left for Florida, she sent the park a list of all the foods her kids could eat.

 

Turning to faith
 

For Sarah, the hardest part of all of this is watching her children suffer physically, mentally, emotionally and sometimes even spiritually.  

“It rips my heart out to see them in pain or vomiting, or feeling left out from activities at school and the holidays,” she said. 

Dragging them to medical appointments, getting blood draws, approving painful medical procedures and not having an end point to shoot for make it all very difficult as a parent, she said.  

The Aurits, members of St. Wenceslaus Parish in Omaha, said they have a strong support system of friends, family and others who live with this disease – some worse off than them. But they rely on their faith to more than anything else.

“I honestly don't know where we would be without our faith,” Sarah said. “We have hit some really dark spots … but in those moments, God is so tangible.” 

She said she sees it as an honor to be able to join her family’s sufferings with Christ's. 

“We do it imperfectly, but there is meaning attached to what we go through,” she said. 

 

She said she thinks perhaps her family is being called to a radical form of fasting.

 

“I know we can use it for good,” Sarah said. “I think it’s going to be a blessing in the long run.”

Legislative efforts

 

The Aurits said they are grateful to have negotiated some time-limited coverage through Medicaid for Gianna and J.P. because of their feeding tubes. They now, however, are in the middle of a “perfect storm” where they fear losing all avenues of access, Sarah said.

 

That’s why for the last couple of years the family has worked to have legislation passed requiring insurance companies to cover the elemental formula. 

 

Currently there are 16 other states that have passed similar laws to what the Aurits want to do in Nebraska. They’re working with many parents throughout the country to garner support for Legislative Bill 397 and share information. 

“This isn’t a right or left issue; this is a medical issue and it’s a response to the disease,” Scott said. “This is a formula that is prescribed by a doctor, obtained at a pharmacy through that prescription and you have to be under the care of physician throughout this process, and those items are included in the bill, too.”

The Aurits learned Wednesday that the Banking and Insurance Committee will vote on the bill April 1. 

They’re asking people to pray and to contact the committee members and ask for a vote and for the support for this to go to the full legislature, Scott said. Then they may attach the bill to a few other bills and let the full legislature vote on it, he said. 

“We’re really in the crunch zone here. We’ve got two weeks left to move this process through,” Scott said.

Even though a legislative vote looks promising right now, they understand things might not go in their favor. Sarah said if that happens, her family will be OK. She’s more worried about the other families who are “hanging on by a thread.”  

“We know families who have lost their homes, filed bankruptcy, lost everything because this formula is just so expensive,” Sarah said.

 

Others get their formula in unsafe ways by buying it off ebay or purchasing open containers, or have a child get a feeding tube placed just so their insurance company will cover the costs, she said. That involves surgery, it’s expensive and complications are involved.

“People are so desperate,” she said. “There’s definitely a need there.”

 

Want to help?
 

The Aurits hope people will contact members of the Nebraska Banking, Commerce and Insurance Committee and encourage them to support the LB397.

 

Nebraska Banking, Commerce, and Insurance Committee

• Sen. Mike Gloor, Chairperson 

Phone: (402) 471-2617

Email: mgloor@leg.ne.gov

• Sen. Kathy Campbell 

Phone: (402) 471-2731

Email: kcampbell@leg.ne.gov

• Sen. Tom Carlson 

Phone: (402) 471-2732

Email: tcarlson@leg.ne.gov

• Sen. Mark Christensen 

Phone: (402) 471-2805

Email: mchristensen@leg.ne.gov

• Sen. Tommy Garrett 

Phone: (402) 471-2627

Email: tgarrett@leg.ne.gov

• Sen. Sara Howard 

Phone: (402) 471-2723

Email: showard@leg.ne.gov

• Sen. Pete Pirsch 

Phone: (402) 471-2621

Email: ppirsch@leg.ne.gov

• Sen. Paul Schumacher 

Phone: (402) 471-2715

Email: pschumacher@leg.ne.gov

Blogged by Lisa Maxson, senior writer/reporter.

UNL Newman Center

Ah, college. Can’t believe it’s been 15 years since I graduated from the University of Nebraska-Lincoln with my journalism degree.

I really loved my college years, mostly because they involved the Newman Center on the campus. Also known as St. Thomas Aquinas Church - Newman Center, it’s the hub of Catholic campus ministry there.

I was extremely involved at the Newman Center throughout my five years of college. For four of those years, I was a board member and directed one of the Newman Center choirs. It certainly was a “home-away-from-home.”

A rendering of the new St. Thomas Aquinas Church – Newman Center,
which is expected to be completed next spring.
Courtesy: UNL Newman Center

To this day, I can honestly say a majority of my spirituality, knowledge of and appreciation for my faith and religious convictions come from what I learned and experienced at the Newman Center.

That’s why I’m thrilled the parish is in the middle of a five-year capital campaign to build a new, expanded church and student center as well as a Catholic fraternity and sorority.

Father Robert Matya, director of the Newman Center and vocations director for the Diocese of Lincoln, was on Spirit Mornings last Thursday talking about the campaign, “A Great Problem to Have.”

The campaign launched in July 2010 with a $25 million goal, and so far, $16.6 million have been raised from donations across Nebraska and 40 other states.

“It’s a really exciting time,” Father Matya said, referring to the construction of the new church at the same location as the old one – 16^th and Q streets.

The foundation is poured and the steel structure is starting to come out of the ground, he said.

Unprecedented growth

For the last several years, the number of students involved at the Newman Center and attending Mass there has skyrocketed. The unprecedented growth of student participation in liturgies and ministries over the past 15 years is partially attributed to the FOCUS (Fellowship of Catholic University Students) program at the Newman Center since 1999.

About 2,500 students are involved with the Newman Center in some form each week, Father Matya said. Students at Nebraska Wesleyan University and Southeast Community College are also served by the Newman Center. More than 700 students participate in 100 weekly Bible study groups led by FOCUS missionaries, and the four Sunday Masses draw consistently overflowing crowds, he said.

“We were just out of space,” in the old church, which was built in 1960, Father Matya said.

Seating in the new church, expected to be completed next spring, will increase from 300 to more than 650, and the available meeting and ministry space in the Newman Center, which will be finished this fall, will double, he said.  

For Father Matya, one of the highlights of the new church is a 24-foot tall stained glass window of Jesus in heaven surrounded by saints.

“We really wanted to point students to see the reality of where they’re heading – to heaven,” he said.

The project architect is Kevin Clark, Clark Architectural Collaborative3, and construction is being completed by the Kiewit Building Group.

Greek system

Another aspect of the Newman Center campus renovation is the completion of a Catholic fraternity house.

The new Phi Kappa Theta Catholic fraternity house, completed

in August. Courtesy: UNL Newman Center

Phi Kappa Theta Fraternity chapter house – located immediately east of the Newman Center – was completed in August.  The fraternity house, which includes space for communal dining, recreation, a study library and a suite for parents, is designed to accommodate 68 men. Currently 53 men live there.

Pi Alpha Chi Sorority’s chapter house, which will be built about three blocks from the fraternity, will be the last piece of the construction project. It’s expected to be completed by the fall of 2016 or 2017, and hold up to 65 women.

Impact of campus ministry

Last spring, the Newman Center relocated to an old Methodist church on campus, and that’s where most weeknight Masses and ministries are held. Sunday and holy day Masses, as well as various Newman Center activities, are currently held at the UNL Student Union.

Catholic campus ministry has been a part of UNL since 1906, when a small group of students formed the first Catholic club. Its impact on the community hasn’t gone unnoticed. The Newman Center consistently fosters priestly and religious vocations and strong married couples, as well as men and women active in parishes after college.

“Campus ministry is obviously to help students not only just keep safe in the faith while they’re in college, but really to help them grow and develop their character, their person, who they are, during their years at college,” Father Matya said. “It’s so beautiful to see when that happens.”

Father Robert Matya, pastor of St. Thomas Aquinas Church and 

director of the Newman Center, greets students after Ash Wednesday Mass 

March 5 at the UNL Student Union. Courtesy: UNL Newman Center

At the Newman Center, students can attend daily Mass and confession, join a Catholic fraternity or sorority, participate in pro-life activities or other charities, attend retreats and socialize with other Catholic students at events. Students also have the opportunity to be involved in liturgy and music, evangelization and catechesis, community and fellowship, service and mission.

Maggie Skoch, a junior at UNL, said she transferred to Lincoln after her freshman year of college specifically because of the community she experienced during visits with friends to Newman Center activities.

“From Bible studies to community nights, retreats to singing in the choir, the Newman Center has all the essentials for building a strong foundation for one’s Catholic faith,” Skoch said. “Everybody here is excited about living out their faith.”

Students involved at the Newman Center not only have a deep love for Christ and his church, but also have the desire to continue to grow in their faith, she said.

Students and faculty fill the UNL Student Union during one of
four Ash Wednesday Masses March 5. Courtesy: UNL Newman Center.

Christopher German, a UNL student from Humphrey and president of Phi Kappa Theta Fraternity, said it’s been a blessing to encounter the person of Jesus Christ through prayer and the sacraments made possible by the strong community at the Newman Center and Phi Kappa Theta.

“The St. Thomas Aquinas family has literally brought the light of Christ into my life,” German said. “The Newman Center is a collection of people on fire with the Holy Spirit, a multitude of candles shining brightly, inviting those in darkness to come and see the reason for our joy.”     

Come and see

If you’d like to check out the progress on the construction, the community is invited to an open house for the Phi Kappa Theta Fraternity house and Newman Center construction site April 12 from 10:30 a.m. to 1 p.m., prior to the NU Spring football game.

For more information, visit huskercatholic.org.

Blogged by Lisa Maxson, senior writer/reporter.

March for Life

Earlier this week, thousands of people – a majority of them young people – endured frigid temperatures and slippery snow as they marched through the streets of Washington, D.C., to protest legalized abortion in this country, which has claimed the lives of more than 55 million unborn babies since 1973.

Group from the Lincoln
Diocese with Bishop Conley.

Among them were nearly 600 youths from our listening area, including Jacinta Benton, a junior at Pius X High School in Lincoln. Benton said the Jan. 22 March for Life, which marked the 41st anniversary of the legalization of abortion by the Supreme Court decision Roe v. Wade, was a positive and joyful way to give a voice to the voiceless children who have been aborted.

“We held signs and chanted things like ‘We love babies, yes we do, we love babies, how ‘bout you?’:)” Benton said.

She said in addition to bringing back fun memories and new experiences from D.C., she came home with a deeper respect for life and for Catholics.

“Sometimes you forget there are other Catholics in the world who are as on fire with their faith as you are,” Benton said. “It was very refreshing and hopeful to see how many others agree and hope for the same thing: the end of the genocide called abortion.”

While many of us were unable to go to the March for Life, we can do something similar by participating in the Nebraska Walk for Life Jan. 25 in Lincoln. The 10 a.m. walk will begin on the north side of the State Capitol Building and conclude at the UNL Student Union. There Emily Horne, a legislative associate with Texas Right to Life, will speak about how Texas closed abortion facilities and stood up to pro-abortion forces at the Texas State Capitol last summer.

A pro-life Mass, sponsored by the Bishops’ Pastoral Plan for Pro-Life Activities, will precede the walk at 9 a.m. at St. Mary Church on 14th and K streets in Lincoln. Bishop James Conley of Lincoln will preside at the Mass, with Bishop William Dendinger of Grand Island concelebrating. Father Walter Nolte, chaplain to the Respect Life Apostolate for the Archdiocese of Omaha and pastor of St. Bernard Parish in Omaha, will be the homilist.

Jeff Schinstock, director of youth ministry for the Diocese of Lincoln, said he tells people to go to pro-life marches because “seeking justice brings people to seek Jesus Christ.”

While a march may not affect or change the abortion laws in this country, it does change hearts, he said.

“It serves as a beautiful seed that leads to flourishing spiritual lives,” Schinstock said.

More important, it is a large and loud step towards protecting the vulnerable, he said.

I agree. A large group of people walking through the streets of a city, holding signs about God’s love, mercy and forgiveness makes bystanders think. Hopefully it changes the hearts and minds of pro-abortion advocates or those indifferent to the abortion issue.

I’ve participated in several local and national pro-life marches, and I do it to be a voice for the voiceless, for my all those babies who weren’t given a chance to live because they were aborted. I march for the moms who choose life even when it’s not an easy choice, for the parents who choose adoption over abortion, for those women who want to be mothers but can’t because of infertility, and for the couples who have been hurt mentally, physically and spiritually by abortion. 

I also march for those organizations that help pregnant women contemplating abortion choose life. It’s one thing to protest, but it’s another thing to sit next to a scared, pregnant woman and promise to help her through her pregnancy. I think it’s just as important to support pregnancy care centers, which provide all sorts of assistance to mothers and fathers, including free pregnancy tests, medical services, educational programs, baby items and ultrasound screenings.

So, let’s not give up. Continue the good fight to end abortion. Pray, speak out and support life from conception to natural death. 

Blogged by Lisa Maxson, senior writer/reporter

Welcome to the network, Chadron!

Spirit Catholic Radio is happy to announce that as of Dec. 1, Chadron's 89.3-FM is the newest signal in the radio network. 

Chadron is located in the Grand Island Diocese in northwestern Nebraska.

In honor of the launch, several local guests were on the air yesterday to welcome Chadron to the network including Bishop William J. Dendinger of the Diocese of Grand Island, Fr. Timothy Stoner of St. Patrick's Catholic Parish in Chadron and Colby Thomazin of Chadron State College's Newman Center.

“Spirit Catholic Radio is a blessing for the state of Nebraska,” said Bishop William J. Dendinger of the Diocese of Grand Island. “It allows believers and non-believers to hear the Good News of Jesus Christ. I encourage those within the diocese to tune-in and invite their family and friends to do the same.”

Executive Director of Spirit Catholic Radio Jim Carroll recently shared the following message with listeners in Chadron:

"I am delighted to welcome the community of Chadron to the family of Spirit Catholic Radio listeners across the state of Nebraska. Beginning Dec. 1, you can hear Spirit Catholic Radio on 89.3-FM. With the addition of Spirit 89.3-FM Chadron, the Spirit Catholic Radio Network now has five stations that cover 76 percent of the population of the state and the three Nebraska Catholic dioceses and reaches into Iowa, South Dakota, Kansas and Missouri. Spirit Catholic Radio is a non-profit radio apostolate. Our mission is simply to transmit the Good News of Jesus Christ over the radio airwaves. It is our hope that through the family-friendly programming we provide, we’ll help our listeners to develop closer, more meaningful relationships with Christ, learn more about their faith and feel inspired. We carry a variety of programs with nearly 30 hours a week of locally-produced programs in Nebraska, as well as from over 30 sources throughout the country including EWTN, Ave Maria and other networks. I sincerely hope that you will enjoy what you hear on Spirit 89.3-FM. On behalf of the entire team at Spirit Catholic Radio and our four additional stations—welcome to the family Chadron!"

The entire team at Spirit Catholic Radio wishes to extend a warm welcome to our newest listeners in Chadron and we look forward to sharing the Good News of Jesus Christ with you through the radio airwaves each day. 

Click here to download a program guide in Mountain Standard Time (MST).