Camryn Koke, 9, had a dream come true this week when she got to bake a cake for her favorite TLC show, “Cake Boss,” starring her hero, chef Buddy Valastro.
“Camryn is obsessed with the Cake Boss,” her mom, Jennifer Koke said earlier this year, laughing. “This was a dream come true! Camryn has loved this show for years.”
The Cake Boss, which airs on TLC, worked with the Make-A-Wish Foundation to make a forever memory for Camryn, her mom said.
“Buddy and his family were as generous and nice as we thought that would be. He spent about four hours with her. Camryn said she couldn’t have picked a better wish and she is so grateful for her wish granters and the Make-A-Wish Foundation.”
Camryn, whose tenth birthday is coming up, created a tenth birthday cake, Koke said. “She wanted it to be candy-themed. She wants her party to be like a Dylan’s Candy Bar.”
Valastro, Koke siad, is opening a new bakery in Westbury and asked if Camryn would come cut the ribbon with him for the opening of the bakery. “Of course, she is thrilled,” her mom said.
Camryn is a fourth grader at Southold Elementary School who loves playing with her friends, softball, soccer, dance, gymnastics, playing the cello — and her beloved cat, Kip.
On the outside, Camryn looks like a beautiful, happy and healthy little girl — but inside, she wages a daily battle against cystic fibrosis.
According to the Cystic Fibrosis Foundation, CF “is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States, or 70,000 worldwide. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.”
Although Camryn take up to 50 pills a day and has to wear a vest to break up the thick mucous that builds up on her lungs, she is a sunny little girl with a positive attitude who serves as an inspiration for many, not only through the many talks she’s done in public on living with CF, but with an annual “Cure for Cammy” fundraiser.
The Southold fundraisers, Camryn’s mother Jennifer said, have raised tens of thousands of dollars to date for CF research, which has seen major breakthroughs.
“Medication is in clinical trials which will significantly improve and add years to Camryn’s life. Funding for the CFF is the only way to get it to her, and many like Camryn, before her functioning deteriorates,” an announcement for this year’s event, held in April, read.
The annual fundraisers have not only been integral toward raising awareness — many people, Koke said do not know what cystic fibrosis is — but they’ve also made Camryn feel special.
“She knows she’s not doing it alone — so many people are doing this with her,” she said.
Also, Koke said, funding from the government for CF research is scant, so funds raised go directly to the Cystic Fibrosis Foundation.
As for Camryn, Koke said, “We’re lucky, because she’s been doing really, really well.”
Her can-do spirit and spunk have led to a host of speaking engagements and opened doors for Camryn. “She has a funky, fun personality,” her mom said.
In May, Camryn had a song sung for her at the Long Island Ducks game; the piece was written especially for her by a foundation, Songs of Love, that write individualized songs for children with chronic illnesses. “It weaves special things about the individual child — even her cat is in the song,” Koke said.
The song was sung by the Long Island Children’s Choir, and Camryn even threw out the first pitch.
“She’s really got a lot of good things happening to her; a lot of positive things have come through this,” Koke said.
Her dreams, for Camryn, Koke said, are the dreams every mother shares for their little girl. “I just want her to live a normal, happy life,” she said. “I want this disease to be cured so she doesn’t have to worry about fighting this horrible disease every day. And I want her to know how much everyone loves her — but I think she does.”
