Thalassemia, a rare form of anemia, is a genetic condition that occurs when the body doesn’t produce enough hemoglobin alpha or beta proteins. Red blood cells do not form properly and cannot carry sufficient oxygen throughout the body, requiring the patient to receive lifelong blood transfusions.
Baby Severina, or “Sevey” as her family calls her, was born with Alpha Thalassemia Major (Hemoglobin Bart’s Hydrops Fetalis). Sevey’s red blood cells are missing normal hemoglobin and cannot deliver oxygen throughout the body, and is most often a fatal illness.
With the help of five intrauterine transfusions, Baby Sevey and her mother, Anne Marie, beat the odds, and Sevey was born on September 13, 2020. One possible cure for Alpha Thalassemia Major is a bone marrow transplant; however, due to an unknown liver illness, Sevey does not qualify and will continue to receive blood transfusions every three weeks for the rest of her life. This September, Sevey celebrated her first birthday of many!
Unfortunately, there is no known cure for Beta Thalassemia. Kamila receives blood transfusions every three weeks and Ella every two weeks. At Rady Children’s Hospital - San Diego, they often receive blood together which can take between four and six hours from check-in to check-out. Having a "Thal Pal" and buddy makes that long process a lot more fun. Their families have created a very close bond to each other and to San Diego Blood Bank.
Kamila's mother Maria reflected on what it was like for her daughter to have a new Thalassemia diagnosis and shared,
To walk into that hospital room and see a perfect little girl... I cried. I was filled with so much joy and hope for the future. There were so many unknowns and so much scary information out there. But here was Ella who, just like Kamila, needed blood due to thalassemia, and she was perfect in every way." - Maria Saradpon, Kamila's mom
Bravery is a word you can use to describe these #ThalassemiaWarriors who can live full and healthy lives with the help of Rady Children’s, their doctors, families, and blood donors. In fact, by the age of seven, Kamila had already reached 100 blood transfusions. Donate in honor of Kamila, Ella, and Sevey with donor code: THAL at registration.
To donate blood, you must be at least 17 years old, weigh at least 114 pounds, and be free of any major cold or flu-like symptoms. If you are unable to donate, we encourage you to spread the word to family and friends and encourage them to save a life!
Want to learn more about becoming a blood donor? Visit our FAQs to get answers to all your blood donation questions.
Sources: Cooleys Anemia Foundation and Thalassemia.org