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SUPPORT AUDREY's Unicorns Fight Against Cystic Fibrosis

Apr 28, 2019 1:09 PM
SIGNAL NEWS

Most would agree that the Varner family has rare qualities. Longtime Santa Clarita residents Candice and Chris Varner are well-known local educators with a reputation for maintaining a supportive role in the lives of their students, even after graduation.

But in a rare and challenging situation, the teachers have become the students, as Chris and Candice have been learning to navigate circumstances beyond their control.

Chris is both a teacher and the head football coach at West Ranch High School and Candice is the director of district relations for Opportunities for Learning. They also have five children, both adoptive and biological, who are in myriad sports and activities. While the inherent challenges of a large family would be difficult for anyone, the Varners had an additional setback last year when their oldest daughter, Audrey, was diagnosed with cystic fibrosis.

The disease is rare and Audrey’s diagnosis at the age of 6 was also unusual. “What normally happens is you get a newborn screen where they check the genes and cystic fibrosis is one of those,” Candice explained. “Audrey’s adopted and those records weren’t transferred, so we don’t know if she was flagged for that or not.”

Audrey was hospitalized for pneumonia last year and she wasn’t improving after being treated with antibiotics. The doctors were unsure why, but hinted at the possibility of cystic fibrosis.

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She was placed on the waitlist for Children’s Hospital and the Varners were grateful when she advanced to the top so they could access the hospital’s experts.

“Audrey had gotten a diagnosis of asthma and they didn’t think that’s what it was,” Candice explained. “They did gene testing. For cystic fibrosis you have to have a gene from both parents. If you only have one, you’re a ‘carrier,’ but if you have both then you have cystic fibrosis.”

It’s unimaginable for most parents to keep moving forward, even with a small family. But the Varners, in rare form, continue to handle it like troopers.

“My husband and I processed it differently,” Candice said. “I was kind of in denial. (I thought) ‘33,000 is such a small number, there’s no way.’ For me it was a gut punch, but for Chris, he had already processed it. Chris was really my rock with this.”

Support from competent medical professionals is also a big help.

“She has the most amazing team at Children’s Hospital,” Candice said. “We were lucky we were immediately connected with them. The support from them and the Cystic Fibrosis Foundation has been incredible.”

It’s a “family affair,” Candice said about handling schedules, treatment and difficult news.

“Audrey is the middle of five kids and we’re really blessed that our kids understand that Audrey takes sometimes a little more of Mommy and Daddy’s time because she’s sick,” she said. “I’m really proud of how my kids have rallied around her. It’s a Varner family thing.”

Candice said they remain open about the facts. “Yes, it’s terminal. There’s no cure and my kids know that,” she said. “There are times, like after a bad appointment, it’s nice to come home to a supportive atmosphere. When you don’t have any other option, you make it work. Cystic Fibrosis will not define her life.”

She calls the support from the Cystic Fibrosis Foundation “amazing.”

“When Audrey first got her diagnosis I knew she was getting taken care of. I needed something to take care of me too,” she said. “The Cystic Fibrosis Foundation reached out to me and connected me with some other cystic fibrosis parents in Santa Clarita. It was amazing to talk to parents who knew what I was talking about.”

Through the Foundation, the Varners were introduced to the fundraiser Great Strides. “Right away, immediately, Audrey was the one who got so excited about it,” Candice said. “It made me feel better about the whole thing – raising money to find a cure for my daughter.”

The upcoming Great Strides event gave Chris and Candice a place to convert their emotion into action, and since there’s not yet a cure, more research is needed, which means more money is needed. So, they formed a Great Strides team – Audrey’s Unicorns.

For a family fighting an epic battle with unimaginable stakes, the unicorn seems an appropriate symbol. And with the help of friends, the Varners defied odds once again.

“We immediately dove into this,” Candice said. “They told me how we could grow a team and we were lucky – with the community and West Ranch High School and Opportunities for Learning, Audrey’s Unicorns had the largest team – and we did that in three weeks.”
There are various streams of funding during the Great Strides team-building process. Topper’s Pizza held a fundraiser for Audrey’s Unicorns, the largest the Valencia pizza restaurant had ever had.

“It’s amazing to see how people are coming out to support her,” Candice said. “The football team was there – Audrey sees the football team as 50 extra big brothers for her. As a parent, it was so incredible to see it reciprocated – the community, the football players out to support her.”

The day of the Great Strides walk was also an opportunity for people to show their support. “Just seeing everybody out there in Audrey’s Unicorn shirts … she was so excited to see people there,” Candice said. “She has a tutu and a unicorn headband – amazing to see this little girl empowered.”

This year’s local Great Strides 2-mile walk will be held on Audrey’s birthday – Saturday, May 11 – at West Creek Park in Valencia. Check-in is at 9 a.m. and the walk begins at 10 a.m. Register at Fightcf.cff.org/goto/AudreysUnicorns.

“It’s huge. There are activities, food, vendors and it’s really to raise awareness and understand that this is a struggle not too many people know about,” Candice explained. “There’s no federal funding for cystic fibrosis research. Cystic fibrosis doesn’t have a cure. We are optimistic that the Cystic Fibrosis Foundation will continue the amazing research they’re doing.”

But as for the day-to-day coping, it’s of course not all rainbows and unicorns. “There are times I have to walk out of the room and have a good cry,” she said. “She sees sometimes up to eight doctors and specialists in a day. We like to do something special after; we usually go to Disneyland or something. If we can finish the day with something fun – she can remember, ‘I had churros and rode Space Mountain,’ rather than ‘I had to have blood drawn.’”

The Varner kids take the “Strawfie Challenge” to relate to their sister during her breathing treatment.

According to the Audrey’s Unicorns web page, there are nearly 300,000 Americans living with cystic fibrosis, and symptoms include difficulty breathing – similar to breathing through a straw. The medication is $300,000 a year, Candice said, grateful for the support from the Cystic Fibrosis Foundation. “It’s very expensive to be sick.”

The work continues and so does the hope, especially for Audrey’s Unicorns, who are aiming to raise money for enough research to find a cure. Showing her resolve, Candice summed up her commitment to the cause: “We will walk until a cure for cystic fibrosis is found.”

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