CAF – Kamila, 9 year old with hemoglobin e-beta thalassemia © Saradpon Photography
By Maria Saradpon
My nine-year-old daughter Kamila was born with a rare genetic blood disorder called hemoglobin e-beta thalassemia. This chronic and potentially fatal disorder does not allow her body to make adequate hemoglobin, preventing her body from getting the oxygen it needs. At just two months old, Kamila received her first blood transfusion—a life-sustaining necessity she will rely on for the rest of her life.
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.
Having been previously unaware of this rare blood disorder (there are estimated to be less than 2,000 people in the U.S. diagnosed with a critical form of thalassemia), my husband and I didn’t know where to turn for help or guidance. The only images I could find of babies with thalassemia portrayed a grim future for our precious baby girl. We felt hopeless 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.
CAF is the only national foundation in the United States solely focused on thalassemia. It’s also the only source for people living with thalassemia for the latest information on medical trials, treatment and care options, a supportive community, and, most importantly, hope.
Medical advances made over the last 30 years—thanks largely to CAF’s diligent advocacy and medical research funding—have made it possible for my little girl to live a fuller, healthier life. However, there is still a long way to go. Thalassemia is an “orphan disease,” meaning it’s very rare and receives little funding compared to better-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!
Your donation 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 Kamila get to live a full and active life.
Kamila has touched so many people in her nine short years of life—her infectious smile lights up any room. She’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 disorder. It’s our hope that she 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 a 501(c)(3) nonprofit organization 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. Since CAF was founded in 1954, life expectancy for thalassemia patients has grown substantially; most patients used to pass away in their teens or 20s, but now they are living well into their 60s.
The number of patients represented by CAF has grown significantly in the last seven years. CAF has been instrumental in the funding, research, development, and FDA approval of several groundbreaking thalassemia treatments and therapies, most notably iron chelators, non-invasive iron measurement technology, and gene therapy.
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.