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

Moira Cullings

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: A holy Church begins with you

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A holy Church begins with you

Bishop Rodriguez challenges Catholics to realize their call to holiness

Roxanne King

Even as the Catholic Church deals with the disgrace and shame of the clergy sexual abuse scandal and moves forward with repentance and renewal, it is challenging as faithful not to be disheartened and discouraged.

The answer to this situation is to follow the Scriptural mandate to holiness all Catholic Christians have been given, Denver auxiliary Bishop Jorge Rodriguez told attendees of the May 17-19 Aspen Catholic conference titled, “The Encounter: New Life in Jesus Christ.”

As he who called you is holy, be holy yourselves in every aspect of your conduct, for it is written, ‘be holy, because I [am] holy,’” the bishop said, quoting I Peter 1:15-16.

“Holiness,” the bishop asserted, “…is the only thing that will get our Church through this crisis. It’s a transformation that we all need.”

The annual conference, an initiative of Father John Hilton, pastor of St. Mary Parish in Aspen where the event was held, drew people from the Archdiocese of Denver and from outside the state to strengthen their relationship with Jesus Christ, deepen their understanding of the Catholic faith, renew their spirit in the beauty of Colorado’s high country, and return home equipped to better share their faith.

Despite the current crisis, which is evidence the Church is comprised of sinners, every Sunday when professing the Creed, Catholics say, “I believe in the holy Catholic Church.”

“We say publicly that we believe the Catholic Church is holy. Do we mean it?” Bishop Rodriguez mused before affirming: “The Catholic Church, like it or not, will always be holy for three reasons.”

First: “Jesus Christ is the author of holiness and he is the head of the Church. … Jesus is the Church with all of us. The holiness of Jesus fills the whole Church.”

Second: “The Church is the only institution in the world that possesses all the means of sanctification left by Christ for his Church to sanctify its members and to make them holy.”

Third: “There are many, many holy people in the Church, both in heaven and here on earth.”

Holiness…is the only thing that will get our Church through this crisis. It’s a transformation that we all need.”

Slain STEM School shooting hero Kendrick Castillo is an example of a holy, young Catholic, Bishop Rodriguez said.

“He gave his life for his classmates. If this is not holiness, what is?” the bishop said about the 18-year-old who was killed May 7 when he tackled a teen shooter.

Servant of God Julia Greeley, a former slave known for her acts of charity and generosity from her own meager means to others in early Denver, and St. John Paul II, who in emphasizing the universal call to holiness of all Christians beatified and canonized more people than the combined total of his predecessors in the five centuries before him, were among others Bishop Rodriguez mentioned who comprise “the great cloud of witnesses” (Heb 12:1) of those believers who have preceded us into God’s kingdom. Additionally, there are countless “next-door saints,” he said, using a term coined by Pope Francis to describe those unknowns of heroic virtue among our family, friends and neighbors.

Rodriguez said, because the Scriptures say, Christ so loved the Church and gave himself up for her to make her holy (Eph 5:25-26).

“‘The Church is holy because it proceeds from God, who is holy,’” the bishop said, quoting Pope Francis’ Oct. 2, 2013, general audience address. “’It is not holy by our merits; we are not able to make her holy. It is God, the Holy Spirit, who in his love makes the Church holy.’

“The Catholic Church is and will be holy, even though some of her members still need repentance and conversion,” Bishop Rodriguez said. “Great sinners don’t make our Church unholy, but make the Church a factory of saints, where sinners are made holy by the power of God.”

Holiness is our deepest longing because we were created to be holy, the bishop said. But the only way to realize that call is to submit to God and allow him to transform us, he said, using the scriptural analogy of clay taking shape in a potter’s hands.

“We cannot deserve, produce, gain, create, or make holiness,” Bishop Rodriguez said. “Only God in his gratuitousness and infinite love can make a saint of you. … Holiness is pure gift, is grace.”

Catholics believe holiness is real — that grace received through the sacraments, prayer and reading Scripture, infuses and transforms the believer into a new creation, Bishop Rodriguez said.

“Salvation is real,” the bishop said. “Pope Francis [warns] about a heresy that has been in the Church since apostolic times under different appearances — Gnosticism. It is a doctrine of salvation by knowledge, reducing Christianity to doctrine [or] text, to something intellectual.”

In doing so, Gnosticism loses the flesh of the incarnation and reduces Jesus to his message, Bishop Rodriguez said. Likewise, Protestant theologian Rudolf Bultmann, a major figure of 20th-century biblical studies and liberal Christianity, promoted “demythologizing” the Gospel to attract modern adherents.

As a result, “people lost faith that these things really happened,” Bishop Rodriguez said. “[Bultmann] did tremendous damage to Christianity.”

The Apostles, however, insisted on the truth of Jesus’ incarnational reality, the bishop said, noting the First Letter of St. John proclaims: What was from the beginning, what we have heard, what we have seen with our eyes, what we looked upon and touched with our hands, concerns the Word of life — for the life was made visible; we have seen it and testify to it and proclaim to you.

Great sinners don’t make our Church unholy, but make the Church a factory of saints, where sinners are made holy by the power of God.”

“Our Christian faith is not a body of doctrines, not a code of conduct, not an ethical idea, not an elaborated ritual,” Bishop Rodriguez said. “It is not even a community. It is a personal encounter with Jesus Christ. It is an event. It is a person. It is an event that happens. In the Gospel everything begins with an encounter with Jesus. Have we encountered Jesus?”

Jesus may be encountered through prayer, Scripture and the sacraments, Bishop Rodriguez said.

“These are three gifts God has given to us to open us to holiness,” he said. “These are the Catholic ways to have a personal encounter with Jesus that is real.”

Regarding prayer: “The best way to start is to become aware of Jesus presence. … prayer [then] becomes a personal encounter, otherwise it’s an intellectual exercise.”

Regarding Scripture: “It’s not about information … it’s about God telling his love for me.”

Regarding sacraments: “The sacramental life is God touching me with his holiness.

“In the Catholic Church we believe that Jesus Christ didn’t want us to only have a recorded memory of him as in the Scriptures, but a living presence among us. He said: ‘I will be with you until the end of time.’”

I dare you to allow God to make a great saint of you.”

Just as Jesus was present with the people of Galilee healing and forgiving them, so he is present with us today through the sacraments, Bishop Rodriguez said.

“That’s why he instituted the sacraments. Each sacrament is a merciful and sweet touch of Jesus in our lives,” the bishop said. “This is what we mean when we say he makes us holy through the sacraments.”

So why isn’t there more holiness in our lives and more saints in the Church?

“God wants to work with our clay … but to make a saint is a question of love,” Bishop Rodriguez said. “Love cannot be imposed, it cannot be mandated.”

Rather, one must cooperate with God’s grace to become the saint God desires.

“Last March, Pope Francis wrote an apostolic exhortation on our call to be holy, Rejoice and Be Glad,” Bishop Rodriguez said. “His thesis is that we have been made for happiness, and true happiness and joy only comes from a holy life.”

Holiness doesn’t mean perfection, performing miracles or that we are not tempted, Bishop Rodriguez said. Rather, it means loving God and one’s neighbor by doing the everyday tasks of life with love.

The answer for times of persecution and crisis in the Church has always been the holiness of the people of God, Bishop Rodriguez said.

“I dare you to allow God to make a great saint of you,” he challenged.

“This is our response to the Church crisis today: holy Catholic men and women,” he asserted. “We will never give up and we will fight against discouragement and loss of hope. Jesus is with us as he promised.”

Featured image by Roxanne King