Daughter’s rare disorder leads Connersville family on faith journey with ‘divine connections’

Joshua, left, Kathryn, Laura and Levi Marszalek, members of St. Gabriel Parish in Connersville, pose in front of the parish’s Marian grotto on Nov. 24. The family’s faith has been enhanced through Kathryn’s early diagnosis of Alternating Hemiplegia of Children, or AHC, an extremely rare neurological disorder. (Photo by Natalie Hoefer)

By Natalie Hoefer

CONNERSVILLE—Joshua (Josh) and Laura Marszalek rejoiced in February 2011 at the birth of their second child, a daughter. They named her Kathryn Faith.

“She really should have been Kathryn Ann after some grandmothers, but we went with Kathryn Faith,” says Laura.

That middle name proved to be meaningful, perhaps even providential.

Around the age of 1, Kathryn was diagnosed with Alternating Hemiplegia of Childhood (AHC), “a very complex [neurological] disorder” with a “rare, one-in-a-million occurrence,” notes the AHC Foundation (AHCF) website.

“It causes episodes of temporary paralysis on half the body, the right or left side,” Josh explains. “While she’s in an episode, she’s unable to walk. And when it’s a right-side episode, she has trouble eating and speaking.”

The impact on the lives of Josh, Laura and their 16-year-old son Levi has been tremendous—but not just in terms of caregiving.

“Our faith has always been there,” says Laura. “But it’s definitely grown and deepened” as a result of Kathryn’s condition.

Along the way, the couple has witnessed how God has used Kathryn’s AHC to make a difference in others’ lives.

Like the call of her former school aide to embrace Catholicism.

Or inspiring Elizabeth Hauger and Carrie Pfeiffer—the family’s fellow parishioners at St. Gabriel in Connersville—to create a fundraising event that in turn calls more people to action.

And the Marszaleks have marveled at God’s providential care in their own lives, seeing in retrospect what Laura calls “divine connections.”

They first noticed the pattern through one pivotal person at Cincinnati Children’s Hospital.

A life-defining intersection

Starting at 6 weeks old, says Laura, Kathryn had spells with various symptoms—stiffening of one side of her body, tremors, unusual eye movements.

Her first major episode struck at 9 months. The Marszaleks were referred to Riley Children’s Health hospital in Indianapolis, where she stayed for five days undergoing multiple tests.

“AHC is hard to diagnose because it looks like other things—epilepsy, cerebral palsy,” Josh explains.

Unable to identify a cause for Kathryn’s symptoms, the doctors told the Marszaleks to follow up in two years.

Just two months later, at 11 months, Kathryn had another major episode.

“We thought she was dying,” says Josh. He and Laura prayed about what to do.

“We started heading back to Riley,” says Josh.

Then, at a life-defining intersection, he asked Laura to check the rankings of the nation’s children’s hospitals dealing with neurology. Cincinnati Children’s Hospital ranked #3 nationally, while Riley ranked further down the list.

“So, instead of taking a right-hand turn, we took a left-hand turn” toward Cincinnati, says Josh.

For reasons the couple now credit to divine providence, they did not meet with a doctor at the hospital.

Instead, says Laura, “A neurology resident walked in—not a fellow, not even an attending physician, but a resident. And she says, ‘You know, we had somebody six months ago that looked just like this. This is a one-in-a-million diagnosis, but this really could be AHC.’

“Because of her, we were able to get an official diagnosis a few months later. It was years earlier than most people.”

In 2018, Kathryn started having seizures, a condition in addition to AHC. Josh and Laura took her to Cincinnati Children’s Hospital for a brain scan after a 2-hour seizure.

“We’re in the room, and in walks the same resident, only she was an attending physician by then,” says Laura.

“I remember hugging her and saying, ‘We have tried to find you,’ because we wanted to thank her and tell her what a difference she made.

“And then she’s the face that is there when we have kind of a new catastrophe and are in a very low spot. And it’s clearly a face we would trust.

“Those are the divine connections that we started seeing,” Laura says. “There’s been a lot of the Holy Spirit moving things around.”

Holy Spirit working ‘all the time’

The Marszaleks now see the Holy Spirit in action “all the time, in so many ways,” says Laura.

“Like, one of my favorite Scripture passages is Jesus’ explanation that a man’s blindness was … ‘so that God’s works might be revealed,’ ” she says of John 9:1-3.

“Then one day, the next verse jumped out at me: ‘We must do the work of him who sent me while it is day’

[Jn 9:4]. It made me see we can’t just rest in the fact that God is working. We have to do the work, too.”

The Holy Spirit also reshaped Laura’s focus on Hebrews 12:1. It’s encouragement to “run with perseverance the race that is set before us” resonated with her—until the day her eyes were drawn to the preceding words: “Since we’re surrounded by so great a cloud of witnesses.”

“I realized [coping with Kathryn’s condition] isn’t really about me running this race,” she says. “It’s about the witnesses that are around us.”

The couple also see the Holy Spirit at work through Levi’s calm disposition.

Josh recalls a chaotic moment when medics were working on Kathryn during a seizure, and he saw his son “sitting quietly, praying the rosary.”

Another time, Josh was frantically driving Kathryn to the emergency room.

“Levi is sitting in the front seat holding his sister, who’s turning blue and having a seizure,” he says. “But he’s calm. I’m freaking out, and Levi—who was maybe 12 or 13—is holding his sister and praying.”

The Marszaleks also recognize the Holy Spirit through those who help them carry their cross—people like Hauger and Pfeiffer.

‘God has his hands all over this event’

Josh and Laura are strong supporters of the AHC family organization's mission to fund research for a cure. For more than

11 years, Josh served as vice-president then president of the AHC Foundation.

In 2016, the Marszaleks helped the organization host a conference in Indianapolis. When the couple reached out for volunteers from St. Gabriel, Hauger responded.

The experience left her with a desire to do more to help the family.

She and Pfeiffer had volunteered together as charity event organizers before. Now, the friends felt called to team up again, this time to help the Marszaleks raise money to fund AHC research.

They developed a fundraiser called Warriors for Kathryn, with 100% of the donations going to AHC research projects.

The benefit also created a means for more people to help “do the work” while building an even greater “cloud of witnesses.”

The Connersville community event launched in February 2017 primarily as a poker tournament. It now also includes wine bingo, basket raffles, food and more.

In eight years, Warriors for Kathryn has raised nearly $175,300.

“This is a very poor area of the state, but the people are amazingly generous,” says Laura. “I thought $10,000 sounded like a good goal for the first year. We ended up raising $17,000.”

But the Marszaleks, Hauger and Pfeiffer also recognize the greater force behind the success.

“God has his hands all over this event,” says Laura. “People who don’t even know us seem to feel called to give in the most amazing ways.”

Like the man who wanted to help but had only $1 to give. He bought a basket raffle ticket and won.

Or the woman in a store who overheard the conversation of a volunteer picking up supplies for the event—and handed the volunteer $20 for the cause.

God also works through the generosity of those who contribute to the benefit in other ways.

“It’s not a parish event,” says Hauger. “But the parish supports it, whether it’s people volunteering, making soup and sandwiches or donating items for a basket.”

Plenty of non-Catholics are involved in Warriors for Kathryn as well. The organizers have seen God at work in that regard, too, especially in Hauger’s family: Partly from their exposure to Catholics and the faith through the event, her mom, sister, niece and nephew have been received into the full communion of the Church.

There is another woman God called to embrace Catholicism in essence through Kathryn’s condition.

That story starts a bit rocky.

‘They ended up being best friends’

Kathryn, who is now home-schooled, originally attended St. Gabriel School until her AHC episodes became too frequent in the fourth grade.

“But when Kathryn first started having seizures, the public school system determined she needed a full-time aide to have eyes on her,” says Laura.

The person the public school administrators chose was Mildred “Midge” Rose, a woman well into her 70s.

“She was about to retire, and she did not want to leave the public school,” Laura recalls. “She was pretty salty about moving to St. Gabriel.”

The Marszaleks weren’t thrilled, either.

“She was about Kathryn’s size, and she was elderly,” says Laura. “We were like, ‘Is this really the aide we need? Because if Kathryn goes into an episode, is she going to be able to pick her up?’

“But they ended up being best friends.”

The family stayed in touch with Rose after Kathryn left the school, and she helped at a few Warriors for Kathryn events.

Rose also stayed on at St. Gabriel School.

“She only had one son, and he was in West Virginia, so all the teachers adopted Midge as their mom,” says Laura.

When Rose was diagnosed with cancer, it was a St. Gabriel teacher who drove her to her oncology appointments.

Rose died on June 4 at the age of 81—but not before being received into the full communion of the Church.

“Her coming into the Church was more about the St. Gabriel community,” says Laura.

Still, she acknowledges that God used Kathryn’s condition to bring Rose to the faith community—even if she came unwillingly.

‘No other explanation except divine intervention’

Rose’s conversion is just one of many ways the Marszaleks have seen God at work since they first recognized “divine connections” at Cincinnati Children’s Hospital.

“I look back on some of the decisions we made and realize we weren’t really the ones making them,” says Laura. “When you look back, you can see where things have just kind of shuffled together in preparation for the next thing, and there’s no other explanation except divine intervention.”

As for Levi, he says his little sister’s condition has “taught me to pray and turn to God. … It calms me down.”

Now the high school sophomore prays before swim meets, school tests and Mass, even “at night when I’m tired and in the morning when I don’t want to get up.”

Josh has found comfort in God’s presence, too.

“There have been times that Kathryn has been in the hospital on a ventilator or had prolonged seizures,” he says. “And almost every time I thought something was just impossible, there was always, like, this feeling that I wasn’t alone.”

The cross of his daughter’s condition is still heavy.

“I can’t say I’m not angry,” Josh admits. “But it’s not going to make me walk away from my faith. If anything, it makes me want to lean into it more.”
 

(For more information on AHC, go to ahckids.org. The next Warriors for Kathryn event will take place in the Expo Hall at the Fayette County Fairgrounds on Feb. 14. It typically begins at 5 p.m. Check www.facebook.com/W4Kathryn for updates and how to contribute.) †