Daughter's rare disorder leads Indiana family on faith journey with 'divine connections'

CONNERSVILLE, Ind. (OSV News) -- 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," said Laura.

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

Around age 1, Kathryn was diagnosed with alternating hemiplegia of childhood, or AHC, "a very complex (neurological) disorder" with a "rare, one-in-a-million occurrence," notes the AHC Foundation website.

"It causes episodes of temporary paralysis on half the body, the right or left side," Josh explained. "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," Laura told The Criterion, newspaper of the Archdiocese of Indianapolis. "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 -- 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.

Starting at 6 weeks old, said 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 explained.

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," said Josh. He and Laura prayed about what to do.

"We started heading back to Riley," he added.

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 No. 3 nationally, while Riley ranked further down the list. The couple went to Cincinnati.

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

Instead, said Laura, "a neurology resident walked in -- not a fellow, not even an attending physician, but a resident. And she said, '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," Laura said. "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 two-hour seizure.

"We're in the room, and in walks the same resident, only she was an attending physician by then," said Laura.

"Those are the divine connections that we started seeing," Laura added. "There's been a lot of the Holy Spirit moving things around."

The Marszaleks now see the Holy Spirit in action "all the time, in so many ways," said Laura.

The Holy Spirit also reshaped Laura's focus on Hebrews 12:1. Its 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 said. "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 said. "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.

Josh and Laura are strong supporters of funding research efforts to find a cure for AHC. For nearly 11 years, Josh served as vice-president then president on the AHC Foundation's board of directors.

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

She and Pfeiffer had volunteered together as charity event organizers before. Now, the friends felt called to team up again, this time to create a fundraiser called Warriors for Kathryn, with 100% of the donations going toward funding research to find a cure for AHC.

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

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. Since the launch, Warriors for Kathryn has raised more than $264,000.

"This is a very poor area of the state, but the people are amazingly generous," said 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," said Laura. "People who don't even know us seem to feel called to give in the most amazing ways."

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

"It's not a parish event," said 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 with the church.

Kathryn attended St. Gabriel School until the fourth grade, when her AHC episodes became too frequent.

"When Kathryn first started having seizures (at St. Gabriel), the public school system determined she needed a full-time aide to have eyes on her."

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," said 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."

Kathryn was later home-schooled and now takes life skills classes at a public school. But the family stayed in touch with Rose, who even helped at a few Warriors for Kathryn events.

She also stayed on as an aide at St. Gabriel School. Later diagnosed with cancer, Rose died on June 4, 2024, at age 81 -- but not before being received into full communion with the church.
"Her coming into the church was more about the St. Gabriel community," said Laura.

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

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," said 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 said 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 said. "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 admitted. "But it's not going to make me walk away from my faith. If anything, it makes me want to lean into it more."