When Jake Beneski, 21, was young, he and two of his three siblings - all brothers - were “Make A Wish kids.” The experience changed his life. He now works for Make A Wish Connecticut (MAW). Westport Lifestyle is honored to tell his story.
At six weeks old, Jake and his twin brother, Seamus, had suffered a string of ear infections, sinus infections, and pneumonia. Both were diagnosed with Common Variable Immunodeficiency (CVID) and Von Willebrand disease (VWD).
CVID renders a person’s immune cells incapable of creating the antibodies necessary to protect the body from infection, primarily in the upper airways. Individuals with WVD lack the von Willebrand factor which enables blood to form clots, therefore they bleed more easily than those with the factor. Though it’s rarely life-threatening (uncontrollable bleeding) it can cause anemia and pain.
The boys required medicine every four weeks “or they would not survive.” Each infusion took 36 hours and was administered at the Connecticut Children’s Medical Center.* Unfortunately, the frequent infections forced their parents to bring them far more often.
Meanwhile, Jake’s mother became pregnant and had the baby tested in utero. The test came back positive and soon the twins had a younger brother, Eamon, with CVID.
Life was hard. They had to quarantine every flu season and spent numerous other days in the hospital. “I was ostracized,” he says, “kids were always saying ‘He’s sick all the time but he looks healthy.’” Whenever he tried to explain his story it “felt like I was backed into a corner” and he had to defend himself.
A Child Life Specialist at the hospital recommended the boys to MAW. The boys thought “Great!” but the parents were terrified - what does this mean for their children? MAW was inaccurately known for granting wishes to terminally ill children. Factually, they grant to critically ill children who often survive to adulthood.
When the parents conceded, they were welcomed into the MAW family. “From that moment on,” says Jake, “I knew we were part of something greater.”
Eamon wished to stay at the Sponge Bob hotel. A few years later, when Seamus was eight (in 2007) he saw a rainfall shower on the Travel Channel and thought, “Wherever that is, I want to go.” So MAW packed up the family and shipped them to Hawaii for a week.
“We were so happy when we traveled,” Jake recalls. “Without our MAW trips, I wouldn’t remember anything about my childhood. Because why would I?” His mother took a sick child to the hospital 250-300 days a year. Most days were spent wearing gowns, and hooked up to IVs.
The year after Hawaii, Jake wished to meet the cast of The Suite Life with Zack and Cody. “They were twins, I was a twin,” Jake smiles. MAW spirited them to Hollywood where they viewed the taping of the show and met the cast. But the best part? “A limo picks you up,” he recalls “I knew it was coming and I thought ‘This one’s for me!’”
To this day, Jake feels the excitement of a limo ride, "When kids pull up in limos it takes me back to the joy I felt.”
In 2010, when Jake was 10, MAW hosted its annual fundraiser and invited the Beneski family to be their “Gala Family.” As gala ambassadors, the boys were asked to speak to the donors during the party. “You go onstage in a room filled with people in tuxedos, wine glasses, fancy decoration, and they’re listening to you. You’re not saying anything ground-breaking, just your life experience. But your experience will help the next kid.” He was finally listened to without judgment.
He credits this gala as the best memory of his childhood, gifting him life-changing confidence when he realized his life mattered and people cared. It was then he vowed to work at MAW when he grew up.
But life goes on.
Entering middle school, Jake is partially deaf having had 75 ear infections before his second birthday. He’s hitting adolescence, doesn’t fit in with his peers, and has acne. For a pimply sick kid, each day introduces a new struggle. He and his brothers weren’t getting support. Schools treated them as though they were perfectly fine because, shoot, they looked “normal” so why give them an extra edge? Jake’s grades dropped and he couldn’t keep up with the work from missing so many classes.
The stress and indignation of not being acknowledged overwhelmed Jake and he dropped out of school. “I had a lot of anger,” he admits.
His parents understood. But they also knew the situation wouldn’t improve for him - or anyone - if he didn’t speak up. “Listen, you’re right,” Jake’s parents told him. “They don’t understand it. You can drop out or you can go in and say ‘This is what you need to do for kids like me and be part of the solution.”
Speaking up as a misunderstood minority takes enormous courage; Jake, an infirm teenager, wasn’t up to the challenge. Then he considered his brothers and the other kids who’d have the same problems. He thought of the gala and how the adults listened when he spoke. He could do this.
So he returned to school. He spoke up to the administration and helped them create online classes for kids who couldn't attend in person. He began teaching a health class. He created what kids like him would need and, serendipitously, what every kid would need during the pandemic.
He graduated from high school in 2018.
Last September, MAW hired Jake as their Wish Journey Coordinator. He runs their alumnae program and all events for Wish families, past and present. Jake nods, “It’s great to come full circle.”
Yet although MAW creates miracles, it’s not all limos and sunshine.
“I’ve seen things that are upsetting. We’ve seen kids pass and that’s very difficult,” he says soberly. “I’ve heard it so much that my job is too sad. I tell them, do we run from it or do we change it? We get to be the light that the families need.”
And if he could have any wish right now?
“My wish is corny,” he smiles. “I want everyone to experience the power of a wish. Not necessarily get a wish - you can donate one or volunteer.”
Then he adds, “A wish isn’t a one-time thing, it transforms lives.”
And in so many ways, it saves them.
Wish.org/CT
*A few years later the medicine could be infused at home, taking three hours.