Photo © Courtesy of Cooley’s Anemia Foundation
Help kids with Cooley’s Anemia live longer, healthier lives
By Joe Vigliotti
Our 10-year-old son A.J. was born with a genetic blood disorder called beta thalassemia major, also known as Cooley’s anemia. This chronic and potentially fatal blood disorder does not allow his body to make adequate hemoglobin and so his body can’t get the oxygen it needs.
In order to survive, thalassemia patients require blood transfusions as often as every two weeks, rigorous chelation therapy to prevent toxic iron buildup in the organs, and extensive treatment and monitoring to manage complications. Even with the recent advancements in medical care and treatment, thalassemia patients can suffer life-threatening complications, quality of life issues and a significantly reduced lifespan.
A.J. began his daily chelation therapy at the age of two. This essential therapy reduces the risk of organ failure, a potential complication caused by the large amounts of iron each blood transfusion introduces into his system. With this medication comes exorbitant costs and extensive monitoring to manage potential side effects and complications.
A.J.’s mother and I felt hopeless about his diagnosis until one of our doctors told us to call the Cooley’s Anemia Foundation (CAF). After one conversation with the Foundation, our outlook elevated to hopeful.
Founded in 1954, CAF is the only national foundation in the United States solely focused on thalassemia. It’s also the only source that people living with thalassemia can turn to for the most complete and cutting-edge information on medical trials, treatment and care options, and most importantly, hope.
Medical advances made over the last 30 years—thanks in large part to CAF’s diligent advocacy and funding of medical research—have greatly extended lives and improved the quality of life for those with thalassemia. Before CAF, patients were lucky to make it to their late teens. Now it’s not uncommon for patients to live well into their 60s.
Exciting developments have taken place over the last few years, such as the recent FDA approval of gene therapy to treat transfusion-dependent beta thalassemia. But there is still a long way to go. Thalassemia is an “orphan disease,” meaning it’s very rare and receives little funding compared to more well-known diseases. Consequently, research and progress toward curative therapies are painfully slow. But with your support, we can expedite the search for a universal cure.
The donation you make could be the one that leads to ending the fight against thalassemia. CAF has made tremendous progress with life-changing research and patient care, but they can’t do it alone. Your contribution will help us get one step closer to a cure, and help ensure kids like A.J. get to live a full and active life.
A.J. has touched so many people in his 10 short years of life—his smile truly lights up any room. He’s a special child who brings unimaginable joy into our lives. We’re in awe of the strength of the many other people we have met from all over the world who are struggling with this devastating illness. These wonderful people work through the challenges of this illness with dignity, grace and strength every single day. It’s our hope that he and everyone else living with thalassemia will one day have the chance to live a life free from constant transfusions, medications, hospitalizations and complications. Your support could help turn this hope into a reality.
Together, we can do so much more to fight thalassemia than we ever could do alone. Please make a donation.
The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major.