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

COMING UP: Five Hispanic-American saints perhaps you didn’t know

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The American continent has had its share of saints in the last five centuries. People will find St. Juan Diego, St. Rose of Lima or St. Martin de Porres among the saints who enjoy greater popular devotion. Yet September, named Hispanic Heritage Month, invites a deeper reflection on the lives of lesser-known saints who have deeply impacted different Latin-American countries through their Catholic faith and work, and whose example has the power to impact people anywhere around the world. Here are just a few perhaps you didn’t know.

St. Toribio de Mogrovejo

Born in Valladolid, Spain, Toribio was a pious young man and an outstanding law student. As a professor, his great reputation reached the ears of King Philip II, who eventually nominated him for the vacant Archdiocese of Lima, Peru, even though Toribio was not even a priest. The Pope accepted the king’s request despite the future saint’s protests. So, before the formal announcement, he was ordained a priest, and a few months later, a bishop. He walked across his archdiocese evangelizing the natives and is said to have baptized nearly half a million people, including St. Rose of Lima and St. Martin de Porres. He learned the local dialects, produced a trilingual catechism, fought for the rights of the natives, and made evangelization a major theme of his episcopacy. Moreover, he worked devotedly for an archdiocesan reform after realizing that diocesan priests were involved in impurities and scandals. He predicted the date and hour of his death and is buried in the cathedral of Lima, Peru.

St. Mariana of Jesus Paredes

St. Mariana was born in Quito, modern-day Ecuador, and not only became the country’s first saint, but was also declared a national heroine by the Republic of Ecuador. As a little girl, Mariana showed a profound love for God and practiced long hours of prayer and mortification. She tried joining a religious order on two occasions, but various circumstances would not permit it. This led Mariana to realize that God was calling her to holiness in the world. She built a room next to her sister’s house and devoted herself to prayer and penance, living miraculously only off the Eucharist. She was known to possess the gifts of counsel and prophecy. In 1645, earthquakes and epidemics broke out in Quito, and she offered her life and sufferings for their end. They stopped after she made her offering. On the day of her death, a lily is said to have bloomed from the blood that was drawn out and poured in a flowerpot, earning her the title of “The Lily of Quito.”

St. Theresa of Los Andes

St. Theresa of Jesus of Los Andes was Chile’s first saint and the first Discalced Carmelite to be canonized outside of Europe. Born as Juana, the future saint was known to struggle with her temperament as a child. She was proud, selfish and stubborn. She became deeply attracted to God at the age six, and her extraordinary intelligence allowed her to understand the seriousness of receiving First Communion. Juana changed her life and became a completely different person by the age of 10, practicing mortification and deep prayer. At age 14, she decided to become a Discalced Carmelite and received the name of Theresa of Jesus. Deeply in love with Christ, the young and humble religious told her confessor that Jesus told her she would die soon, something she accepted with joy and faith. Shortly thereafter, Theresa contracted typhus and died at the age of 19. Although she was 6 months short of finishing her novitiate, she was able to profess vows “in danger of death.” Around 100,000 pilgrims visit her shrine in Los Andes annually.

St. Laura Montoya

After Laura’s father died in war when she was only a child, she was forced to live with different family members in a state of poverty. This reality kept her from receiving formal education during her childhood. What no one expected is that one day she would become Colombia’s first saint. Her aunt enrolled her in a school at the age of 16, so she would become a teacher and make a living for herself. She learned quickly and became a great writer, educator and leader. She was a pious woman and wished to devote herself to the evangelization of the natives. As she prepared to write Pope Pius X for help, she received the pope’s new Encyclical Lacrymabili Statu, on the deplorable condition of Indians in America. Laura saw it as a confirmation from God and founded the Missionaries of the Immaculate Heart and St. Catherine of Siena, working for the evangelization of natives and fighting or their behalf to be seen as children of God.

St. Manuel Morales

Manuel was a layman and one of many martyrs from Mexico’s Cristero War in the 1920s. He joined the seminary as a teen but had to abandon this dream in order to support his family financially. He became a baker, married and had three children. This change, however, did not prevent him from bearing witness to the faith publicly. He became the president of the National League for the Defense of Religious Liberty, which was being threatened by the administration of President Plutarco Elías Calles. Morales and two other leaders from the organization were taken prisoners as they discussed how to free a friend priest from imprisonment through legal means. They were beaten, tortured and then killed for not renouncing to their faith. Before the firing squad, the priest begged the soldiers to forgive Morales because he had a family. Morales responded, “I am dying for God, and God will take care of my children.” His last words were, “Long live Christ the King and Our Lady of Guadalupe!”