BRISTOL — of all the people diagnosed with cancer, Julia Saulino said, only 10 percent are between the ages of 19 and 39. She was one of those rare few.
Mrs. Saulino knows cancer statistics down pat, because she is a survivor. She is also familiar with the financial burdens that come with the illness, the diagnosis, the treatments and the recovery. Now that her cancer is in remission, she and her husband Peter have set up a foundation to help other young cancer victims through their financial difficulties.
When she was diagnosed with Hodgkin’s lymphoma last July, the Saulinos, who live in Bristol, had only been married for about a year. She was 29 years old at the time and was establishing her career and enjoying life in Bristol with her husband and friends. Her symptoms, she said, included feeling itchy all over her body. Despite a number of tests and doctor visits, the source of her symptoms were overlooked.
“It took a long time to be diagnosed,” Mrs. Saulino said. “The problem with diagnosing young people is that even doctors want to assume that you’re healthy. By the time it was discovered, I was in stage two. it (had) progressed, but it was treatable.”
Despite the physical and emotional distress that came with the disease and the chemotherapy treatments that followed, Mrs. Saulino still considers herself lucky. because she and her husband were covered by medical insurance through their place of employment, most of the bills were taken care of. yet they still accumulated thousands of dollars in bills both directly and indirectly as a result of the disease.
There were PET scans that cost them $1,100. Daily hospital treatments in Boston that racked up travel, parking and hotel costs. Mrs. Saulino also had to take a leave of absence from work, leaving them to rely on one income.
During her hospital stays, it became apparent to Mrs. Saulino that the majority of patients were elderly. She wondered how young people who are ineligible for Medicare, Medicaid or without employer-sponsored medical insurance can afford their bills.
Mrs. Saulino told her husband, “Someone should really do something about this.” She thought of a saying that helped her through her difficult days: “We cannot control the wind, but we can adjust the sails.”
The couple put aside some money and recently established the FLY Foundation — Financial Lift for Young Adults. mr. Saulino, an attorney, assembled a board of directors.
“She’s the heart. I’m the head,” he said of the couple’s roles in operating the foundation.
“We don’t want to force ourselves on people who might not want to ask for money,” Mrs. Saulino said. “Our plan is to go through local connections.”
After they distributed flyers about the FLY Foundation to doctors’ offices and treatment centers, they received their first call from a man named Carlos. They agreed to meet.
Carlos had woken up one day and couldn’t see out of his left eye. His doctor at first thought he may have been hit playing basketball and that the eye would be fine. But this February, Carlos was diagnosed with ocular cancer and his eye had to be removed. This caused the 34-year-old truck driver to lose his commercial driver’s license — and his livelihood. after his surgery, the hospital provided him with a white plastic mold to place in the socket, along with some eye patches. He couldn’t afford a prosthetic eye, which his insurance considered to be cosmetic and would not cover.
“Pretty much if you don’t come up with the money, you don’t get the eye,” Carlos said about his experience with his insurance company. He turned to the FLY Foundation.
“I didn’t know what to think. my luck hasn’t been that good,” Carlos said of calling the FLY Foundation. “It wasn’t about the money. it was just having someone to talk to who knows what you’re going through. it was a relief that someone was willing to help out. It’s a lot off your shoulders.”
Besides providing money for a prosthetic eye, Carlos and the Saulinos have established a bond, turning a tragic situation into something hopeful.
With the Medicare and Medicaid safety net for older cancer patients and numerous foundations that help children suffering from cancer, the Saulinos see their foundation filling the gap, providing help for young adults. Each applicant to the FLY Foundation is reviewed on a case-by-case basis. the awards can be used to pay any number of financial burdens, including medical co-pays, living expenses, utilities and other bills that have accumulated over the course of battling cancer.
“We want to help someone who can sit here and talk with us,” mr. Saulino said. Donations are not used to fund building construction or pay staff.
Anyone interested in donating to or requesting assistance from the FLY Foundation can call 688-5799 or visit the website at www.theFLYfoundation.org.
Support the FLY Foundation
The FLY Foundation will hold a fund-raiser to support its mission of helping cancer patients between the ages of 19 to 39 with financial burdens. the waterfront benefit includes hors d’oeuvres, cash bar and complimentary harbor sails aboard Kestrel, Herreshoff’s 1927 Fishers Island 31. Tickets must be purchased by May 31 by calling 688-5799.
When: Thursday, June 16, at 6 p.m.
Where: Herreshoff Marine Museum waterfront
Cost: $50 per person
<a href="http://www.eastbayri.com/detail/143535.htmltag:news.google.com,2005:cluster=http://www.eastbayri.com/detail/143535.htmlTue, 31 May 2011 15:04:28 GMT 00:00″>EastBayRI.com