'Cure for Cammy' Cystic Fibrosis Fundraiser Set for April

Once again, the community is coming together for Cammy.

Camryn Koke, 8, is a third grader at Southold Elementary School who loves dance, gymnatics, soccer, skiing and playing with her friends.

But often she has to stop what she's doing, while the other kids are still having fun, when it's time for her daily treatments.

Because Camryn has cystic fibrosis. 

According to the Cystic Fibrosis Foundation's website, cystic fibrosis is "an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States, and 70,000 worldwide."

A genetic disease, cystic fibrosis is characterized by a defective gene and its protein product that cause the body to produce unusually thick, sticky mucous that clogs the lungs and leads to life-threatening lung infections. The mucous obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food, the website states.

But while, for an eight-year-old, facing the challenges of cystic fibrosis aren'ts alway easy, Camryn's mom Jennifer said her daughter's spirit remains undaunted.  

"She does everything she wants to do, which is great because being active is good for her lungs."

At times, asking Camryn to stop her activities for her treatments is "a struggle," Koke said. "She asks, 'Why am I the only one who has it?'" she said. "She's at an age where it's getting harder."

But, Koke said, her daughter also has many moments where she is the recipient of an outpouring of love and attention from a caring community who have come together to support her.

To that end, "Cure for Cammy: The 3rd Annual Fundraiser for the Cystic Fibrosis Foundation in Honor of Camryn Koke" will be held on Friday, April 26, beginning at 5 p.m. at the Southold High School gym. The event will feature juggling and magic with Jester Jim, Zumba with Jill Schroeder of JABS, face painting, carnival games, and a Chinese auction. Tickets cost $10 in advance or $15 at the door and are available at the Southold Pharmacy, JABS, and Founders Tavern.

Tickets and T-shirts can be purchased online by clicking here. 

When Koke learned while still pregnant that her Camryn, her first child, had cystic fibrosis, she was frightened.

In order to be born with cystic fibrosis, both parents must be carriers of the gene; neither Koke nor her husband Michael had known that they were both carriers.

The Kokes, who live in Southold and have three other children, Mackenzie, 7, Logan, 5, and Peyton, 3, faced the future with courage.

"I was petrified," Koke said, of learning her firstborn had cystic fibrosis. "I started doing research."

While a student at Southold High School, Koke learned that her history teacher, Andrew Sadowski, had a baby born with cystic fibrosis; two of his children were born with the disease, she said -- and participated in a fundraiser for his family.

Faced with her own diagnosis, Koke turned to her former teacher and found a wealth of support and friendship to help her family.

Cystic fibrosis, Koke said, "is a progressive disease." The lungs and pancreas of those who have cystic fibrosis can't transport salt; mucous builds up in the panceas and lungs. Camryn, Koke said takes pills daily to help her digest and to prevent mucous from building up in her lungs. Camryn, she said, wears a special vest to help "shake" the mucous loose.

In addition, her daughter undergoes nine nebulizer treatments every day, as well as chest therapy with the vest -- total treatments per day take approximately two hours.

But with her fierce spirit, Camryn takes pride in speaking at events and raising awareness about cystic fibrosis, something she began doing when she was only six years old.

"It just amazes me," Koke said. "So many kids would never get up there in front of a microphone."

As parents, Koke and her husband have been "upfront" about her cystic fibrosis. "I didn't want her to feel different in school," she said. "It's nice that everyone knows because all the kids will grow up knowing she has it."

While her daughter participates in the same full slate of activities and sports as her friends, Koke said. "We just have to be really careful if someone is sick, because if she gets sick, it takes her a long time to get over it. This has been the roughest year -- but we've been really lucky."

Still, Koke said, the statistics can be frightening. "They say the life expectancy is 37 years," she said.

And while double lung transplants are an option, there are waiting lists. "That's scary, too," Koke said.

As a mother, the fear haunts her every day. "At night, when I hear her cough, I just cringe," she said.

But rather than fall victim to fear, the Koke family has transformed uncertainty into positive thinking and become proactive in advocating for cystic fibrosis research. 

Each year, the family participates in the Cystic Fibrosis Foundation's "Great Strides" event, which takes place in Westhampton Beach -- as team "Cure for Cammy."

Next, Koke's dear friend Jen Olsen launched the Southold High School fundraisers for Camryn -- all proceeds go to the Cystic Fibrosis Foundation.

In addition, all proceeds from T-shirts donated by her husband's company, Coastal Pipeline, go to the Cystic Fibrosis Foundation, Koke said.

"Truthfully, it's the only thing that makes me feel better," Koke said, of her fundraising efforts. "I feel like it's the only thing I can do, to help her find a cure."

Koke said while many large companies will fund research for other illnesses such as heart disease or cancer, because the number of individuals with cystic fibrosis in the United States is so small, no  government studies are funded.

New drugs are being tested, Koke said -- at a staggering cost of $294,000 per year for those on a trial drug -- and Camryn's gene is currently being studied in the trial stages.

Medical costs are daunting, Koke said -- one inhaled antibiotic to treat her daughter's lungs costs $6,000 per treatment each month. While insurance covers much of the expenses, the co-pays are high. 

"Camryn has taught me to love to the fullest every day," Koke said. "To just make sure every day counts, which we do. We have so much fun." Living with cystic fibrosis, she added, "has changed our lives. We just appreciate our kids so much. We're so grateful to have them, every day."

While Camryn realizes she has a serious disease  -- such as when a little girl asked if people could die from cystic fibrosis, and the answer was yes; her daughter was "hysterical," she said -- Koke said she has focused on remaining strong and positive.

Koke said she reminds her daughter daily treatments are critical for staying healthy.

"We are going to fight this," she said. "This drug is going to come out and we're going to make sure that she lives a normal life. This will be the first genetic disease ever cured – and it will be in her lifetime."

An outpouring of love from the community, Koke said, has been a life-altering experience -- as has the support of her friend Jen Olsen, who has organized all three Southold fundraisers.

"Jen is an amazing friend," Koke said. "My son, who is five, said, 'I know what the cure for CF is - it's Jen Olsen.' I could never repay what she does for me, and for Camryn."

Olsen said she was inspired by Camryn's spirit to help make a difference. "She has so much strength and beauty, inside and out," she said. "She's always so positive. She really feels like she can make a difference in her future, and I really wanted to encourage her to do that."

The Southold community, Olsen said, has turned out in full force for the fundraisers – last year, almost 450 people attended.

"I couldn't believe the response," Olsen said; even those who couldn't attend donated items for the Chinese auction. "The way this community comes together is just amazing -- without even having to ask, everyone is so generous."

Camryn has become involved in actually organizing the fundraisers, Olsen said; the events are places where she can feel special, and help to make a difference.

"It's nice for Camryn to feel empowered," Olsen said. "We're so close to a cure -- one day she can look back and see what she did to make that happen. We are really close -- soon we won't be doing these fundraisers, we'll be having a big celebration."

Her daughter, Koke said, was in a shop in Greenport and coincidentally found three rocks, painted with the words, "Hope," "Believe" and "Breathe," words that the family holds steadfast as they continue to rally for a cure.

"I truly believe we're going to find a cure," Koke said. "She will never stop fighting because we all love her so much. And because of the community -- they're funding her cure. Cystic fibrosis will never win -- because of them."