Camryn Koke continues her fight against Cystic fibrosis in Southold

by |
04/20/2014 10:00 AM |
(Credit: Jennifer Gustavson photos)

Camryn Koke, 9, with her Persian cat, Kip. The 9-year-old Southold Elementary School student has Cystic fibrosis. She and her family has helped raised more than $100,000 to help find a cure. (Credit: Jennifer Gustavson photos)

In the basement of the Koke family’s home in Southold, 9-year-old Camryn is allowed to play with her dollhouse for one hour each morning before heading to school.

On a recent day, she held her favorite doll, Raquelle — a pretty fashionista who likes going to the spa and is featured on TV’s “Barbie: Life in the Dreamhouse.”

“She’s active and sassy — like me,” Camryn said with a smile as she smoothed the doll’s hair.

In Camryn’s other hand was a nebulizer. The fourth-grader also wore a vest that provides periodic electronic chest compressions.

Her mother, Jennifer, compared the motion to shaking a can of paint. When the vest is turned on, Camryn sounds like she’s talking through a fan.

Camryn has been wearing this type of vest since she was just 15 months old, and now uses it twice a day for an hour per session. She said she doesn’t mind, though, because it helps her breathe better.

Camryn is living with Cystic fibrosis.

The hereditary chronic disease, the result of a defective gene, causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, according to the Cystic Fibrosis Foundation. It also obstructs the pancreas and prevents natural enzymes from helping the body break down and absorb food. Life expectancy for people with CF is anywhere from 30 to 40 years.

Ms. Koke first found out Camryn had Cystic fibrosis during her pregnancy. Blood tests later revealed that she and her husband, Michael, both carry the gene that causes it.  The Kokes’ three younger children — Mackenzie, 8, Logan, 6, and Peyton, 4 — were conceived through in vitro fertilization.

Camryn has been fighting Cystic fibrosis her whole life, but she hasn’t been doing it alone.

The community has rallied support for her by participating in various fundraisers to benefit the Cystic Fibrosis Foundation, one of the few organizations that funds medical research to find a cure.

Camryn plays with her dollhouse during her each morning before heading to school.

Camryn wears a vest that provides periodic electronic chest compressions to help her breathe better.

On Friday, April 25, Southold High School will host its fourth and final annual Cystic fibrosis fundraiser in Camryn’s honor. Unlike previous years, the event will feature more family-friendly activities, including carnival games, Zumba by Cutchogue fitness studio JABS and a magic/comedy show by Jester Jim.

Ms. Koke said she recently decided that this year’s fundraiser would be the biggest to date — and that in the future she will concentrate on other fundraising approaches.

Ms. Koke said her friend Jen Olsen has always played an integral part in organizing CF fundraising efforts — and introduced her to JABS owner Jill Schroeder.

In addition to organizing the school fundraisers, a group of supporters participates in the Cystic Fibrosis Foundation’s annual Great Strides benefit walk in Westhampton Beach. And Coastal Pipeline in Calverton — where Michael Koke is employed — created “Cure for Cammy” T-shirts and donates proceeds from sales to the foundation.

Last week, Camryn learned that her request to meet Buddy Valastro, star of TLC reality show “Cake Boss,” had been granted by the Make a Wish Foundation. She also found out that the Long Island Children’s Choir will perform a song composed specifically for her at the May 3 Long Island Ducks game at Bethpage Ballpark. The musical group works with songwriters nationwide to compose customized songs for children with serious illnesses, based on facts about their lives. Camryn’s song is expected to be available for download on iTunes.

Although there is no cure for CF, the Kokes continue to hope. Ms. Koke said Camryn is one of the foundation’s top fundraisers and has raised more than $100,000 overall.

“We wouldn’t be here if it wasn’t for the community,” Ms. Koke said. “I think they’ll always be behind her.”

For more information about the April 25 event, visit the 4th Annual Fundraiser for CFF Honoring Camryn Koke Facebook page.

[email protected]

Videos created by Jennifer Koke: