FITCHBURG — Murder is the name of the game, but instead of mayhem it’s all in the name of good clean fun in honor of an 11-year-old New Hampshire boy who has been battling cystic fibrosis since he was born.
J.J.’s Helping Hands Network founder Cheryl Cucchiara is organizing a Murder Mystery Dinner & Show on Saturday, Oct. 1 at the British American Club through her nonprofit, with all proceeds benefiting the Cystic Fibrosis Foundation in her nephew Lionel West II’s name.
“The campaign hits home for my family,” the longtime city resident said of her personal connection to the important cause. “He has gone through so terribly much in his 11 young years.”
Cystic fibrosis, or CF, is a progressive genetic condition that affects a protein in the body. People who have cystic fibrosis have a faulty protein that affects the body’s cells, tissues, and the glands that make mucus and sweat, which causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways, which in turn can cause severe damage to the lungs, digestive system, and other organs.
Upon waking up each morning, Lionel “has to be fitted with an inflatable therapy vest that uses high-frequency airwaves to force the mucus that’s deep in his tiny little lungs to come up towards his upper airways so he can cough it up,” Cucchiara said. “This is a ritual he endures each morning and evening, never mind the many hospital stays he has had over the years and the feeding tube to help get nourishment into his tiny body.”
She said it’s important to her to be an advocate and bring more awareness to CF.
“We are planning this event in order to help with more research involving cures, treatments, and to extend longer life expectancy for children like my nephew,” she said.
The fundraiser will feature a spaghetti dinner with meatballs, salad, bread and butter, and dessert after the doors open at 5 p.m. There will be raffles including a 50/50, a Chinese auction, and the Boston Murder Mystery Company show will start promptly at 7 p.m.
The occasion is part of J.J.’s Helping Hands’ long history of community outreach, the nonprofit dedicated to helping those less fortunate that Cucchiara founded four years ago in memory of her son Jesse Jarvis, who passed away on Mother’s Day in 2018.
“Feel free to vent if you are missing a loved one on J.J.’s Helping Hands Network as we know what you are going through, or if you’d like to share your experience and how you handled your grief or even yet volunteer to help with our mission,” she said. “It’s a safe place to be who you are, voice your frustrations, and give and receive support.”
Over the years J.J.’s has held diaper drives for young mothers, food and clothing collections, comedy shows and dinners, among many other events.
“We’ve worked with Coats for Kids alongside with the Knights and recently the Teddies & Blankets Campaign for Needy Children, and what a campaign it was, it was terrifically huge,” Cucchiara said, with their latest efforts the Murder Mystery Dinner & Show event.
Cucchiara said they are “very excited” to have signed on Sheila Tines as their CF spokesperson for the Murder Mystery fundraiser, a fellow Fitchburg resident who lives with CF firsthand.
“Unfortunately, she will not be able to attend as planned but we are working on doing a Zoom interview from her hospital bed,” Cucchiara said of Tines. “She will talk about what most patients endure through their life such as ‘cleaning out’ every six months and will explain much more about cystic fibrosis and answer any questions people may have.”
Tines, whom Cucchiara calls “an inspiration to many of those suffering from this horrible disease,” occasionally speaks about her own experience with CF at various events. At the age of 54, Tines is way over the life expectancy for a person with CF.
“I’m happy to be one of the more mature patients raising that bar every day,” Tines said from her bed at Massachusetts General Hospital, adding that life expectancy for CF is now up to 44. “It means I’m doing something right!”
She said that while she was slated to speak in person at the Oct. 1 fundraising event, she “had to improvise to make my appearance virtual.”
“Life with CF can change rather quickly, which is evident by my hospital admission, which sadly, will have me here during the event,” Tines shared.
She said she can relate to Lionel’s experience as a person constantly dealing with CF.
“I have been sick my whole life and I lived a rather unconventional childhood by being homeschooled by a private tutor up until seventh grade simply because I was too sick or too compromised to be around other kids,” Tines recalled. “In the lungs, which is my main area of manifestation, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, avoiding germs is a top concern for people with CF, hence the unconventional childhood.”
Although there is no cure for cystic fibrosis, a range of treatments can help control the symptoms, prevent or reduce complications, and make the condition easier to live with, therefore improving quality of life. Regular doctor appointments to monitor the condition are needed and a care plan is set up based on the person’s needs.
“As a person ages with CF, the condition progresses so it is important to remain disciplined in our daily meds and treatments which includes nebulized meds, pills, airway clearance, physical activity and exercise, rest and being cautious of who we are around, always,” Tines said. “It is a full-time job with no holidays or vacation. It is a difficult life to live, and even though many of the people you meet with cystic fibrosis will make it look easy trust me, it is not.”
Despite her personal battle with the disease, Tines has managed to stay positive in the face of immense difficulties and struggles.
“I am proud to still be fighting the CF fight at my age, every birthday is a trophy or another stripe on my uniform,” she said. “It shows my strength, my courage and my determination to beat this as long as I can.”
Tickets for the Murder Mystery Dinner & Show are $30 per person and can be purchased at the British American Club, 1 Simonds Rd. Fitchburg any time after noon or by calling Cheryl Cucchiara at 978-855-1712.
For more information including volunteering email firstname.lastname@example.org. To donate, make checks out to Cheryl Cucchiara and mail to 16 Clearview Ave., Fitchburg, Mass., 01420.
Sentinel & Enterprise Correspondent Cheryl A. Cuddahy contributed to this report.