[Editor’s Note: Post originally appeared on SILive.com, where I was a breaking news intern from January to August 2016.]
About 50 people braved the rain Sunday and walked in Clove Lakes Park to raise awareness of Cooley’s anemia.
The Care Walk Cooley’s Anemia Foundation has been in existence since 1985 and has organized the walk on Staten Island for the past five years.
“The people who came are just amazing, dedicated volunteers,” organizer Cammie Brandafino said.
Brandafino, of Willowbrook, noted that her daughter has Cooley’s anemia.
“It goes to show you that when people support you anything can be done,” she said.
Cooley’s anemia, or thalassemia, is a rare blood disease. Those who suffer from it must rely on blood transfusions and medication to live. About two million Americans carry the trait for the disease without even knowing it, according to the Cooley’s Anemia Foundation.
Brandafino’s daughter, Danielle, has to go for transfusions every two to three weeks and has to wear a pump that infuses a chelator for eight hours each night. And being that there’s no cure just yet, one of the things the foundation advocates for are blood drives.
“We want there quality of life to be a lot better than it is today,” Brandafino said. “They can’t live without transfusions. Our kids need blood. They all have to survive.”
Lynda Saulle, of New Dorp, who has had Cooley’s anemia since she was born, participated in the walk to not only raise awareness about the disease but also to honor her sister and best friend who died from the disease.
“It’s rough,” Saulle said about living with the disease, “but you got to take what God gives you and make the best out of it.”
For more information on the disease visit the Cooley’s Anemia Foundation website.