Barbara Cellini is helping those with Huntington’s disease and their families have a better quality of life through the Thomas Cellini Huntington’s Foundation.
“I want them to live with the disease, not die with it,” Cellini said.
Cellini, 72, founded the foundation in 2006. The nonprofit is named for her husband, Tom Cellini, 75, who has been living with the disease for 20 years, she said.
The organization’s goal is to educate and offer emotional and financial support to Huntington’s disease patients and their families who often do not have the resources to care for them.
Cellini said families often are unable to find a residential facility that will take in their loved ones because they require around-the-clock care.
According to the Thomas Cellini Huntington’s Foundation website, www.homeopathyplanet.com/TCHF, the disease “is a degenerative brain disorder that causes spontaneous body movements, diminishes the affected individual’s ability to walk, talk, think and reason. Eventually, the person with HD becomes totally dependent on others for his or her care. The final result is a slow, painful death.”
Cellini said the disease also is devastating to families of patients, with 50 percent of the children also getting the disease.
The Cellini family’s situation more than bears out the statistic. Barbara Cellini said she and her husband had five children before they knew Tom had Huntington’s, and three of their children have the disease. Alisa, 46, also a mother, has active symptoms and is home with her parents to get care as her disease progresses.
“The disease follows in families, so it depletes the finances in a significant manner,” Cellini said.
She said a spouse often is counseled to divorce the patient to prevent having all of the family resources go to patient care.
The foundation holds two annual fundraisers to help families offset the costs associated with the disease. It has helped families pay for insurance premiums, mortgage payments, cremation and burial costs, bathroom remodels and many other necessary items, Cellini said.
The foundation now is helping a single mother of three children who is attempting to care for her family while dealing with Huntington’s, Cellini said. Volunteers shop for holiday and birthday gifts for the children and food for the family.
Another young woman is the recipient of some funds toward her “bucket list” wish to return to a place of her childhood for a possible last visit with her family.
Cellini said items from donors such as Bed Bath & Beyond and buybuy Baby are offered to people at the support and educational meetings held at the foundation.
But more is needed.
“I have more requests than I have money,” Cellini said.
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One way to help is to support the 2015 Thomas Cellini Annual Dinner and Fundraiser, set for March 27 at Idlewild Country Club, through donations for the silent auction and raffle baskets, Cellini said.
“Any kind of donation is wonderful,” she said.
A raffle for a Class A motor home is set for March 27, but tickets are on sale now, Cellini said. The motor home is in “like new condition, with only 14,000 miles on the odometer and only 190 hours on the generator,” according to the website.
Cellini said she and her husband “had 35 productive years … and we achieved the American dream” as residents of Chicago Heights who raised their family and built their Broadway Auto Rebuilders business in Chicago Heights before moving to Flossmoor 27 years ago.
Cellini said she was “blessed” with good people to help her make decisions about her husband’s care after he was diagnosed with Huntington’s, allowing him to have quality of life despite his disease.
She said the goal of the Thomas Cellini Huntington’s Foundation is to offer that to others by educating people who carry the Huntington’s gene about their options before having a family, and to provide resources to families with the disease so they can remain together with “some sense of normality.
“We get her done; we get a lot done,” Cellini said. “We have a lot of good people.”