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: Working to make our schools safer

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By Carol Nesbitt

The issue of school safety is always on the minds of parents. Parents want to know that schools have a plan in place for all types of emergencies, from fires to intruders to staff or students feeling unsafe for various reasons.
The Archdiocese of Denver is excited to share that they now have someone directly supporting the safety preparedness and plans of the 37 Catholic schools under its watch and care.

Matt Montgomery is a former police officer and award-winning school resource officer (SRO). He’s also a chemistry and forensic science teacher as well as Director of Security and Safety at Holy Family High School. And, as of Nov. 13, he is the new Interim Director of Schools Security and Safety for the Archdiocese of Denver Catholic Schools. The position is new and the first of its kind for the Archdiocese of Denver, but important.

“As a Catholic school community we believe the safety and wellbeing of our students comes first. Time and again we hear our parents rate school safety as one of the top reasons why they entrust the care and formation of their children to our schools. As such, we believe we have a duty and moral obligation in our schools to ensure we are doing everything we can to ensure our children are safe from any type of harm,” said Elias Moo, Superintendent of Catholic Schools. “Historically, each of our schools has had to take on the crucial task of defining and implementing their own safety and security plans and systems. While our schools have certainly gone to extraordinary lengths to ensure the safety of their school community, we believe it is critical in our current reality that we provide our schools with the expertise and qualifications of someone like Matt to support them in really analyzing their plans and assisting them in ensuring best practices are being implemented. It’s the least we can do for our school communities.”

“My role is really to lead a task force with the intention of identifying needs around school safety,” said Montgomery. He says there are a number of great models for school safety around the area, so it’s more about bringing it all together. “All public schools have someone overseeing safety and security, usually with staff members doing threat assessments, suicide assessments and emergency drills, building security, fire drills, and those kinds of things, but there really isn’t a position like this in other dioceses that we are aware of.”

Montgomery says that his job will be taking the variety of practices at schools and helping to bring consistency in efforts across the Archdiocese of Denver Catholic School community. He also says that the term ‘school safety’ is more broad than people realize. “When people think about school safety, they always gravitate to school shootings, but I think we really have to step away from that and realize that school safety and security is an umbrella. It encompasses everything from events prior to an incident all the way through recovery (post-incident).”

The five areas Montgomery is focusing on include:

Prevention
What do we do to create a loving and responsive Catholic community where students and staff feel safe and are empowered and given resources to report any behaviors or activity that is unsafe and counter to our values?

Protection
What systems and proceses do we have to vigilantly monitor for behavior or activity that is harmful to our Catholic community?

Mitigation
What procedures and policies are in place to mitigate issues?

Response
If an incident occurs, how do we respond to that incident? How do we support that school from an archdiocesan perspective? What tools are we able to provide to that school? What relationships do we have with law enforcement and first responders in that community?

Recovery
Recovery begins the second an incident occurs. How do we reunite students with families, provide counseling support and address staff issues in the case of a crisis?

Montgomery says his work will also help establish a plan for the archdiocese in the case of a larger emergency.

“What is our incident command structure going to look like so that we can respond to an incident, while also keeping in mind the unique structure of the various schools beneath the Office of Catholic Schools?”

He’d like to see the Standard Response Protocol — created by the I Love You Guys Foundation — used throughout the school system.

“One of the issues I noticed is that there are a lot of different agencies who respond to various incidents and they don’t know what the other ones are doing,” Montgomery said. “The crisis plan needs to be uniform, created for a specific age group. We need to standardize our crisis plans throughout the AoD and work with the schools to create private plans for each school that is specific to that school, simple plans that outline for administration on how they implement the plan at the moment of crisis.”

One of the biggest things Montgomery will be doing is identifying policies and procedures and training. “This is uniformly saying ‘This is what we’re doing, this is how we’re going to do it, and these are the amount of times we will practice it each year.’” This also includes training of staff on mandatory reporting, the importance of documenting things, and threat assessments that ask the right questions to get a non-biased, vetted approach to assessing threats. “There are a lot of things we can do to mitigate the chance of someone being hurt at a school. That’s by good training, good policies and procedures, and hardening our targets, meaning the physical security of our school buildings,” said Montgomery.

As a teacher, Montgomery says he has a unique perspective. “I’m not just some cop or just an SRO. My heart is in the classroom. I’m a Catholic educator who used to be a cop. My goal is to make sure kids can focus on being a kid and learning, not having to worry about being hurt at school or being bullied or having thoughts of suicide. I want them to feel that school is a safe place. That’s why I do it. I really love doing school safety.”