Photo Courtesy Dina Marie PhotographyAlex bounces a ball from the moment he wakes up to the time he is tucked into bed at night. He loves sports. He lives and breathes baseball. In fact, he was the strongest t-ball player on his team and has quickly advanced to farm. Alex’s mom says nothing will hold Alex back from staying active in sports—not even a very serious disease called Evan’s Syndrome, which he has had since he was 1.
Evan’s Syndrome is a rare autoimmune disorder in which an individual’s antibodies actually attack the body’s own red blood cells and platelets. Treatment varies, and there is no cure. Steroids are often used to help suppress the immune system, decreasing production of the “bad antibodies.”
Alex was referred to a pediatric hematologist at Miller Children’s Hospital Long Beach. He has undergone immunosuppressive therapy, including steroids and blood transfusions, to combat the disease. Alex underwent treatment with a new kind of antibody, called Rituxan, which in clinical studies has shown promising results in treating Evan’s Syndrome. Amazingly, this treatment has kept him out of the hospital ever since—the longest hospital-free stretch for Alex since he was first diagnosed. He still visits his hematolologist monthly and is closely monitored, but this year he hasn’t missed a single baseball game or more than a couple of days of the first grade. In fact, you could say that keeping healthy has allowed Alex to keep his game face on both on the baseball field and in the classroom—where he’s also scoring at the top of his class.
Because Alex is not only a sluggerologist on the baseball field—but an Evan’s Syndrome avenger at Miller Children’s Hospital Long Beach—he is our hero.