WEST SUFFIELD -- As soon as Tim and Cara Beneski heard the news on Sept. 26, 2008, they called their sons to "The Island," their king size bed that is haven for family time.
"We told them Paul Newman had passed away," Cara said. "They were hysterical, so upset."
Almost three years later, Jake and his twin brother Seamus, 12; and younger brother Eamon, 10, still are moved when Newman's name is mentioned.
"When he died, I didn't know anything about that he was a race car driver, a famous actor or anything," Jake said. "All I knew was he was the man who started The Hole In The Wall Gang Camp."
The camp in Ashford is so vital to Jake, Seamus, Eamon and other children ages 7-15 who have been diagnosed with cancer, sickle cell anemia, AIDS, hemophilia, metabolic diseases and other serious illnesses and conditions.
"It's a place where I feel normal," Seamus said. "People don't ask, 'Why is your leg black and blue? Why are you missing school? Why do you take all those medicines?' "
Jake, Seamus and Eamon have common variable immune deficiency (CVID). They have increased susceptibility to infections and require weekly infusions of Immunoglobulin to provide protective antibodies.
They also have von Willebrand Disease, a bleeding disorder that affects the blood's ability to clot, and arthritis related to CVID, and they receive care for seizures, migraines and asthma.
Tim and Cara's oldest son Chancey, 14, doesn't have CVID.
Tim and Cara estimate they were at Connecticut Children's Medical Center in Hartford about 200 times last year for routine visits, treatments, surgical procedures and hospital stays for their children.
On a recent Saturday two large boxes of prescriptions arrived at their home. "Before insurance, for the first quarter of this year the cost for prescriptions, doctors, specialists, hospital and medical care was about $750,000," Cara said.
Tim said joy for he and his wife is "to do the best we can for the health of our children, and it's every time we can do things that a normal family does."
Like having their children enjoy camp.
"At camp, I feel like it's home," Jake said. "I feel regular there. There are children who have just what I have, and some people who have worst conditions than me. Even though we have medical problems, each of us is special in his or her own way."
Eamon, whose middle name is Charles Yaz, weighed 8 pounds, 8 ounces at birth. The family's allegiance to the Red Sox and No. 8 Carl Yastrzemski made it natural to have "Yaz" for part of his middle name.
Eamon enjoys baseball and the theme weeks that are standard at The Hole In the Wall Gang Camp, which admits each of its campers for free. "Disney, cowboys; they're all great," he said. "There's so much to do and no one is excluded."
Seamus, who loves woodworking at camp, said activities differ for the campers depending on their medical conditions.
"When we play games, they're so everyone can play," he said. "If someone says, 'I can't play that,' then no one plays that game. Another one will be found so everyone can play."
Seamus went over to the kitchen table where Cara drew Immunoglobulin with a large syringe and loaded a cartridge. She then placed the cartridge in a small pump that could be held in one hand. Cara inserted three infusion sets into Seamus' abdomen. The infusion sets were connected to the pump, which would inject the Immunoglobulin.
This procedure is duplicated for Eamon and Jake for various dosages and time spans, usually two to six hours.
The Hole In The Wall Gang Camp helps the whole family. Tim and Cara say when their children attend camp, they don't have to worry about any medical problems because the staff is so trained, talented and caring.
"They have a sibling session camp week where Chancey is with people just like him who have brothers and sisters who go to camp," Tim said. "Chancey has gone to four of the camps."
There also is a holiday party in December.
Former campers and staff members from Connecticut, Rhode Island and Massachusetts have been invited to the Travelers Championship any day this week with free admission to visit the camp's tent in the Fan Zone or its Corporate Row chalet.
"We just want to say 'thank you' to everyone who helps the camp," Tim said. "We're all going to the Travelers Celebrity Pro-Am Wednesday and to the third round Saturday. And Seamus and Jake are going to take beginning golf this summer."
On July 17, Seamus and Jake will attend their sixth year of camp. For Eamon it'll be his fourth.
The excitement in their voices when speaking about horseback rides, games and every aspect of camp and their widening eyes reveal their one-week session can't arrive soon enough.
Jake smiled and said, 'Camp makes kids happy."
To donate to The Hole In The Wall Gang Camp visit holeinthewallgang.org.Copyright © 2015, The Baltimore Sun