Family finds strength in faith after ‘devastating’ diagnosis of ‘rare sisters’

Cecilia Fries had just received her first reconciliation, First Communion and confirmation when she told her mom something deeply profound.

“When [the priest] put the oil on my head, I got really hot,” said Cecilia. “And when I drank Jesus’ blood, it washed me all on the inside.

“And now I can die.”

Her statement would seem transcendent even for a spiritual adult.

But Cecilia is only 9 years old, and she has CLN3 Batten disease, an inherited disorder that affects the nervous system.

“This is coming from a kid who has speech and language difficulties and can’t communicate accurately that she can’t find her shoes half the time,” said Cecilia’s mom, Beth.

“For her to spiritually connect those pieces — sacraments getting you closer to heaven.”

It leaves Beth and her husband, Jon, simply amazed.

‘Absolutely devastating’

Life was normal for the Fries family until Cecilia began losing her vision in 2014.

Over the next three years, she underwent visits with an eye doctor and a specialist, and eventually received genetic testing, which came back negative. During this time, Cecilia’s younger sister Lilly also began losing her vision.

Around Thanksgiving 2017, Beth took Cecilia for additional blood tests. More than a month later, Beth heard from the doctor, who finally had a diagnosis, but was hesitant to tell her.

“Children’s [Hospital] will call you in an hour,” he said. “But it’s CLN3.”

“Ok, good, we have something to go on,” Beth thought.

She called Jon on her way home to let him know the diagnosis. Already at a computer, he was able to look it up immediately.

“It said, ‘rare neurodegenerative disease — fatal,’” said Jon.

We don’t believe in coincidences. We believe in miracles.”

“I just remember the buzzing and tingling in my ears getting really hot, and being like, ‘No. That’s not happening. This isn’t the whole story.’”

When Beth made it home and discovered the same results, she “collapsed on the laundry room floor.”

“It was just absolutely devastating,” said Jon.

As the couple continued reading and saw words like “cognitive decline,” “mobility loss,” and “feeding tube,” they were horrified.

And then the worst came — “life expectancy: late teens to early 20s.”

CLN3 Batten disease, which both Cecilia and Lilly have, is extremely rare, and there is no cure.

“When you read that’s what’s going to happen to your child,” said Beth, “all the hopes and dreams [shatter].”

‘Tremendous blessings’

Beth and Jon have five daughters — Cecilia (9), Lilly (8), Nora (5), Ruthie (4) and Zelie (18 months). The family belongs to Spirit of Christ in Arvada and is fueled by their faith.

But it wasn’t until 2015 when Jon joined the Catholic Church.

Cecilia, 9, began losing her eyesight in 2014. When she and her younger sister, Lilly, were tested, the doctors found they are affected by CLN3, a rare neurodegenerative disease. (Photo by Aaron Lambert)

“That was right before everything started to fall apart and change,” said Beth. “Looking back, we can see how much stronger our marriage is now because we both have Christ at the center of our marriage.”

Throughout the time since the diagnosis, the Fries family has experienced community support and several miracles that have kept them going.

“There’s been tremendous blessings that have come from this somehow,” said Beth.

Faith has been a central part of Cecilia and Lilly’s journey.

When Lilly, who is normally very quiet during car rides, recently told her mom about a dream she had, that became even clearer.

“I went to heaven,” Lilly told her mom.

“What was it like? What did it look like?” Beth asked curiously.

“It smelled like the oil that they put on my head at confirmation,” Lilly replied.

“She told me that St. Therese [of Lisieux] was there — she’s her favorite,” Beth said with a smile.

The couple explained that their daughters don’t know the disease is fatal.

“But yet they say things like, ‘We’re going to go to heaven to be with Jesus someday,’” said Beth.

“It seems to sound like they’re at peace with their station in life,” said Jon.

‘We believe in miracles’

It’s easy for Beth and Jon to feel anger toward God in the midst of their suffering.

“But eventually, it comes down to learning to trust again in God and building that relationship and accepting being angry,” said Jon.

After moments of hopelessness, the couple often experiences “some crazy supernatural coincidence,” said Jon. “Well, when you have as many coincidences as we’ve had, they’re no longer coincidences.”

“We don’t believe in coincidences,” Beth added. “We believe in miracles.”

Lilly, 8, and her sister Cecilia don’t know their disease is fatal, but their deep spirituality and desire for heaven has amazed their parents in different occasions. (Photo by Aaron Lambert)

A primary example happened shortly after the diagnosis when the couple realized their house was too dangerous for their oldest daughters.

Beth drew a floor plan that modeled a ranch with four bedrooms — something she believed didn’t exist. But after searching for homes online, one caught her attention.

“I clicked on it, and the floor plan popped up huge,” said Beth. “The floor plans don’t ever pop up huge. You usually have to click and click [to see then].”

Beth was stunned by what she saw.

“It was almost identical to the floor plan I had drawn four days earlier,” she said.

Beth and Jon walked through the house that night.

“I literally just drew this,” Beth thought, “and we are walking through this right now.”

I know I couldn’t do it without God. I know I could not do this without our Catholic faith, without the sacraments, without being able to receive Jesus on a weekly basis.”

The house had been on the market for three months. It was a ranch because the neighbors didn’t want it to obstruct their view. The basement was unfinished, leaving room for Beth’s parents to move in and help with the financial cost.

Experiences like that are what keep the family going.

“It’s still God there constantly trying to reassure us,” said Jon, “and doing it in little ways.”

In moments of comfort or relief, Jon hears God saying, “I’m going to give you this little piece because if I give you too much, you can’t handle it. We’re going to do it a little bit at a time.”

‘God has our back’

The Fries family has already become involved in spreading the word about Batten disease.

They organized the Expect Miracles Rare Sisters 5k on April 28 to raise money for the Beyond Batten Disease Foundation based in Austin, Texas. Expecting a turnout of 300-500, Beth and Jon were astounded when more than 1,000 people showed up.

The couple wants to do whatever they can to help not only their daughters, but children who will be diagnosed with Batten disease in the future.

“Unfortunately, the amount of research that still needs to be done and our girls’ life expectancies are not going to match up,” said Beth. “But, whatever we can do to help for the babies that will be born 10 years from now, [we will].”

For now, the family lives in the present and continues to rely on God and their Catholic community to keep them going.

“I know I couldn’t do it without God,” said Beth. “I know I could not do this without our Catholic faith, without the sacraments, without being able to receive Jesus on a weekly basis.”

Beth and Jon agree that although suffering is considered a negative in secular society, they have grown to see something greater.

“Suffering is a beautiful word,” said Beth. “There’s so many graces and so many blessings that come from suffering.“Here’s this horrible life-changing, life-ending diagnosis, and yet God has our back,” she said.

“He’s provided for us through this whole thing, and we just have to continue to trust that he will.”

For more information on the Fries family, visit raresisters.org.

COMING UP: Father and son, deacon and priest: Deacon dads and priest sons share special bond as both serve God’s people

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The bond between a father and son is one of God’s greatest designs; however, when father and son are both called to serve the Church as deacon and priest, that bond takes on a whole new meaning. Just ask these two dads and their sons, all of whom answered the call to serve the people of God at the altar.

Deacon Michael Magee serves at Our Lady of Loreto Parish in Foxfield, while his son Father Matthew Magee has worked as the priest secretary to Archbishop Samuel J. Aquila for the past several years and will soon be moved to a new assignment as parochial vicar at St. Thomas Aquinas Parish in Boulder. Deacon Darrell Nepil serves at Our Lady of Lourdes Parish in Denver, and his son, Father John Nepil, served at several parishes within the archdiocese before his current assignment as a professor at St. John Vianney Theological Seminary.

However different their journeys may have been, all four have something in common; mainly, that far from seeing their vocations as a reward from God, they have received them as an uncommon gift of grace that has blessed their families and individual relationships with each other abundantly, knowing that God acts in different ways to help us all get to Heaven.

Interwoven journeys

Deacon Michael Magee was ordained in May 2009, at the end of Father Matt’s first year of seminary. Little did they know that God would use both of their callings to encourage each other along the journey.

Deacon Michael’s journey began when a man from his parish was ordained a deacon.

“I simply felt like God was calling me to do something more than I was doing at the present time,” he said. “I had been volunteering for a number of different things and was involved in some ministry activities and in the Knights of Columbus. And I thought the idea of being a deacon would be simply another activity for which I could volunteer.”

He didn’t know what it entailed at the time. In fact, he believed it was something a man could simply sign up for. To his surprise, the diaconate was more serious – and it required five years of formation and discernment. Yet he was so drawn to it, that he decided to do it anyway. But as he learned more about the nature of the diaconate during his formation, he became more nervous and unsure about whether God was really calling him to that vocation. 

While his doubts remained all the way up to his ordination, Deacon Michael was faithful to his studies, trusting that God would lead him in the right path. 

And God did — through the calling of his own son to the priesthood.

Deacon Michael didn’t realize that his son Matthew had paid close attention to his father’s faith journey and had found in it a light that gave him courage to discern the priesthood.

Father Matthew Magee (left) and his dad, Deacon Michael Magee (right), were both encouraging to one another as they each pursued their respective vocations. (Photo by Daniel Petty/Denver Catholic)

“Seeing my dad, as a father, growing in his relationship with the Lord was really influential for me on my own desire to follow Christ,” said Father Matt. “Looking at his courage to discern his own vocation and follow God’s plan in his life gave me the strength and courage to be open to the same thing in my life… He played a very important role, whether he knew it or not at the time, and whether I knew it or not at the time.”

On the other hand, Father Matt didn’t know that his dad was in turn encouraged by his own response to God’s calling. 

“As I went through all those doubts, I watched Matthew’s journey in seminary and listened to how he was dealing with that in his life. And, as he just articulated very well, I also saw those same qualities in him,” Deacon Michael said. “Seeing a young man in his 20s willing to consider following God for the rest of his life also gave me the courage to continue on in my own journey, to see it through.”

God’s way of uplifting them in their vocations through each other’s journey is something they are very grateful for. 

This unusual grace impacted Father Matt during his first Mass, when his dad, as deacon, approached him before the Gospel reading and asked for the traditional blessing by calling him “father.”

“It was a really special moment for me. He’s certainly my biological father and raised me. But then there’s something different when we’re at the altar in a clerical capacity — there’s a strange reversal of roles when we’re giving spiritual nourishment to the people — a father asks the new father for the blessing,” he said.

In both of their vocations, Deacon Michael and Father Matt see God’s Providence and the unique plan he has for all of us.

“We all have a vocation, even if it’s something we may not expect,” Deacon Michael concluded. “You may feel anxiety or worry about what it’s going to look like, but trust in God. He will take care of things as he always does.”

A bribe for Heaven

For Deacon Darell and Father John Nepil, the journey was different, but not any less providential.

While he grew up Catholic, Father John wasn’t interested in setting foot on any Church activity during his teenage years. His saving grace was perhaps what many parents have to do to get their teenagers to Church: bribe them.

“His mom and I basically bribed him to go to the Steubenville of the Rockies Conference,” Deacon Darell said with a laugh. “He didn’t want to go, but we’d heard so many good things about it, that we said, ‘We’re going to make this happen, whatever it takes.’”

So the Nepils came up with a creative idea.

“He owed me some money for a uniform that he had needed for a job in the summer. So, I said, ‘Listen, if you go to the Steubenville of the Rockies Conference, I’ll forgive your debt. And he did, he and his brother went. And John especially came back a different boy. He literally was converted with a lightning bolt at that retreat.”

To this day, Father John marks his conversion to Christ from the summer before his senior year in high school when he attended that conference. 

As it happens with stories worth telling, the details of how much money he owed his father have varied over the years, and it’s a matter of debate among them, but Father John remembers it was close to $500.

“That’s subject to each one,” Father John said laughingly. “But what matters is that they offered to forgive my debt if I went to this retreat – it was money well spent.”

Besides this important event, Father John said that his dad influenced him in many ways by the simple fact of who he was as a father.

“My dad’s faith and moral character were a rock for me during some difficult teenage years,” he said. “He’s a great example of a man who was always faithful and lived a really outstanding moral life, but then as he deepened in love with Christ, he decided to give of himself in a more profound service.”

Father John Nepil (left) and Deacon Darrell Nepil (right) both had rather roundabout ways to their respective vocations, but they both say serving God’s people together as brothers in Holy Orders is a great joy. (Photo provided)

Besides his desire to serve and follow God, the seed that would eventually lead Deacon Darell to the diaconate was planted by a coworker, who would also take holy orders: Deacon Joe Donohoe.

“One day he said to me, ‘You should be a deacon.’ And, of course, I laughed at him and said, ‘I don’t have time for that. My life is too busy.’ But it only took him to suggest it for the idea to keep coming back to my head, and God kept nudging me. Eventually I decided I really wanted to do that,” Deacon Darell said.

The ability to share at the altar during the Mass has deepened the natural relationship of father and son and given Deacon Darell and Father John new opportunities to grow closer to God. 

One of the most meaningful times came when Deacon Darell had a massive stroke in 2018. While he was in the hospital, Father John was able to visit and celebrate Mass at his bed and pray the rosary with him every day, as he had come back from Rome and was working on his dissertation.

“It was probably the most privileged and intimate time I’ve ever had with my father,” Father John said. “It was an amazing gift that really changed our relationship.”

“I feel like that’s a huge reason why I healed and why I am here today,” Deacon Darell added.

“It’s a real gift to have my dad as a deacon and a brother. It’s a tremendous honor. It’s one of the great joys of my life.” Father John concluded. “That’s really what has bonded our relationship together: the sheer desire to serve Jesus, especially in holy orders.”