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: Late St. Joseph deacon ‘reached out into the peripheries’ during ministry

Sign up for a digital subscription to Denver Catholic!

Deacon Maclovio (Max) Sanchez, 87, passed away peacefully in Olathe, Kansas on April 30. Deacon Sanchez was assigned to St. Joseph’s Parish in Denver throughout his diaconal ministry.

Maclovio Sanchez was born on May 21, 1931 in San Luis, Colorado, to Estevan and Emily Sanchez. He was baptized at Most Precious Blood Parish in San Luis, Colorado, on June 2, 1931 and grew up in Walsenberg, Colorado.  He graduated from St. Mary’s High School in Wasenberg.

On April 24, 1954, he married Mary Frances Marquez at Holy Rosary Parish in Denver.  Over the 65 years of their marriage, the couple was blessed with three children: Martin, Debra and Joshua. They also had numerous grandchildren and great grandchildren.

In Denver, Max worked for Midwest Liquor Company, delivering products to the area stores. But his love was directed towards the poor communities in the metro area.  Max was vice chairman of the Coalition for the Westside Betterment and President of the St. Vincent de Paul Society Food Bank. He and his wife were also very involved in the parish at St. Joseph’s.

On March 22, 1975, Maclovio was ordained a deacon at the Cathedral Basilica of the Immaculate Conception by Archbishop James Casey. This was only the second class of men ordained in the archdiocese at the time. He was immediately assigned to St. Joseph’s Parish where he also conducted numerous Spanish Missions and served at the Westside Action Center. Retiring from ministry in 1993, he continued to serve at St. Joseph’s Parish as long as his health would allow.

“Deacon Max reached out into the peripheries and brought the lost back into the Church,” said Deacon Joseph Donohoe, Director of Deacon Personnel. “We have been blessed to have such a dedicated Cleric and Servant of the Church in Denver.”