At 88 years old, Garden City resident Concetta Paradiso continues to dedicate much time and energy to raising awareness and funds to find a cure for Cooley’s Anemia, a fatal, genetic blood disorder affecting thousands of children.
“People ask me sometimes, ‘Haven’t you had enough?’” Concetta said in a published interview. “Sometimes I’d like to quit, but then I think about it, about how we still don’t have a cure, and I decide to keep on. There are a lot of things going on now in the search for a cure. I hope they find it, and soon.”
Concetta and her late husband Edward had four children: Susan was born in 1949, Peter in 1950, Janice in 1954 and Paul in 1956. Susan and Paul were diagnosed with Cooley’s Anemia during early childhood; after valiant battles, they both ultimately succumbed to the disease, Paul at 17 and Susan at 28 years of age.
Cooley’s Anemia, also known as thalassemia, is the name of a group of genetic blood disorders. Red blood cells consist partially of hemoglobin, which carries oxygen throughout the body. Hemoglobin consists of two different proteins, an alpha and a beta. If the body does not produce enough of either of these two proteins, the red blood cells do not form properly and cannot carry sufficient oxygen. The result is anemia.
Treatment involves blood transfusions every two to three weeks and folate supplements. The disease is fatal because transfusions increase the level of iron in the body. The excess iron collects around organs, including the heart, and ultimately causes them to fail.
The hope for a cure is getting closer each day. Through the years there have been several medical breakthroughs that have made it easier for patients to manage the disease. Many now survive into their 50s.
“The Foundation has research projects that are very promising,” said Janice Cenzoprano, Concetta and Edward’s daughter and member of the local foundation’s executive committee. “They need the funds to continue the research. For the past 40 years, the Garden City community has been generous in donating the funds needed for research, which has added 10 to 15 years onto the lives of children born with Cooley’s Anemia.”
Concetta and Edward joined the national Cooley’s Anemia Foundation in 1956 when Paul was four months old. They became involved in fundraising and organizing blood drives. Concetta served as secretary and Edward became president, a post that Concetta also later assumed.
Eventually, they were two of the primary founders of the local CAF chapter based in Garden City. Concetta continues to raise awareness and funds for research and development. The local chapter hosts four major events a year: a brunch in March, a walkathon and a golf outing in May and a dinner dance in November