Ryleigh Farrell has moon blood.

The 6-year-old was diagnosed with sickle cell anemia at birth, and her mother taught her that her blood cells are shaped like crescent moons, so Ryleigh decided to call it moon blood. Thanks to Camp Good Days and Special Times, Ryleigh has found friends who have moon blood just like her.

Camp Good Days is celebrating its 40th anniversary this summer. The organization offers day programs throughout the year and summer camps for children who have or had cancer or sickle cell anemia, as well as their siblings and families and affected adults.

The camp takes place every summer in Branchport, located about an hour and a half from Syracuse. There are different weeks geared toward specific age and circumstance categories, such as children with one of the diseases or those with loved ones affected by them. The organization has four regional offices, with the central New York office located in Syracuse on North Midler Avenue.

Natasha Farrell, Ryleigh’s mother, learned about Camp Good Days during one of her regular appointments at Upstate Golisano Children’s Hospital. Natasha decided to bring Ryleigh to one of the events, and they’ve been to every event in Syracuse since then, she said.

“It makes her day — it makes her month,” Natasha said. “She’s been able to understand that she’s not different.”

Ryleigh is part of the Junior Good Days, a four-day summer day camp based in Syracuse. They visit places including Wegmans Playground, Fort Rickey and NBT Bank Stadium, home to the Syracuse Chiefs, said Jennifer Holman, program and volunteer coordinator. The overnight camps for older campers take place at Keuka Lake.

Ryleigh is also part of the ‘Cuse Kids Club, which provides monthly activities including bowling, attending Syracuse University sporting events and an upcoming pasta-making event, Holman said.

Ryleigh Farrell attends Camp Good Days events throughout the year and has been able to connect with other children who have sickle cell anemia, just like her. Courtesy of Camp Good Days

Camp Good Days was founded in 1979 by Gary Mervis, whose daughter, Elizabeth “Teddi” Mervis, was diagnosed with a malignant brain tumor at age 9. Mervis realized she needed to have an experience that wasn’t about her diagnosis, such as camping with other children with similar issues so she didn’t feel so alone, said Kathy Reilley, the CNY regional director. Teddi died at age 12, but her memory lives on through the camp.

“It started with one promise a father made to a daughter, and 40 years later, we are still celebrating courage,” Reilley said.

Holman said camp workers and volunteers aren’t “the doctor’s office.” Their goal isn’t to have discussions with participants about their health or provide any sort of spiritual guidance, but simply to have a good time.

Nancy Zlomek, an advisory board member for the camp, has been involved for 20 years. Zlomek’s son, Ryan, was diagnosed with leukemia at age 11 and started attending camp in 1997 after they also heard of the camp through Upstate. Ryan went to camp until he was 18. Now 31, he’s a volunteer with the organization.

“When you have a child with cancer, you can Band-Aid it — you can take care of the nausea, you can take care of the blood counts. But the social piece, they just get knocked out completely,” Nancy said.

Camp is an experience that enables everyone to connect quickly, Ryan said. It provides an opportunity for kids who might not be able to find their social niches to do so, and Ryan met some of his closest friends at camp throughout the years.

Camp events like go-karting, dances and mini golf helped Ryan realize there was so much more to life than just the health issues he was going through. Camp also helped him build confidence and realize what he values in his day-to-day interactions, he said.

“For me, the value was just being able to have a week to spend time with people who’ve been in similar scenarios and see things through their eyes and know I wasn’t the only one going through it,” Ryan said.

The regional offices that provide monthly activities are an advantage of Camp Good Days, Ryan said, because the connections campers make can continue without having to wait until the next summer to be reunited with their friends.

Cancer affects the entire family, Reilley said. It strips away humanity and dignity, and that is what the camp strives to give back to the kids — humanity.

Since joining the program, Natasha said Ryleigh’s confidence has grown. Parents are affected by the programs, too, she said, because they are connected with parents going through similar struggles.

“You can’t walk into a hospital and say, ‘Hey, does your kid have sickle cell?’ It’s hard to find people who are going through the same things that you’re going through,” Natasha said.

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Since 1979, Camp Good Days has served more than 47,000 campers from 22 states and 34 countries, according to its 2016 annual report, and all programs and services are offered free of charge to the participants.

The organization is funded by donors, fundraising and grants. Earlier this month, Fayetteville-Manlius High School hosted a dance marathon fundraiser that raised $94,000 for the camp. The Syracuse region is gearing up for a comedy fundraiser on Wednesday that will take place at Sharkey’s Bar and Grill in Liverpool at 7 p.m.

The event will feature a group of comedians and door prizes. Ninety cents of every dollar the organization raises goes directly to programs and services, Holman said.

Said Reilley: “When you see kids laughing and you know it’s unbridled joy, even if for a second they’ve forgotten all of the crap that is in their life right now, you cannot quantify what it is to see a child laugh when you know that they are dealing with so much stuff that no kid should go through.”

Published on March 27, 2018 at 9:25 pm

Contact Taylor: tnwatson@syr.edu