At age 5, Ben Hopkins, a resident of Tabernacle, has an entirely different perception of what it means to be brave than most kids his age. Although he looks like a typical, happy 5-year-old boy who loves sports and video games, he was diagnosed with Severe Aplastic Anemia, a rare bone marrow failure disorder, at age 3.
To replenish the blood that has been donated to Ben over the years, and to help other families in need, an American Red Cross blood drive is being held in his honor on Sunday, July 10 at the Aloft Hotel in Mt. Laurel from 9 a.m. until 2 p.m. Coordinated by Ben’s mother, Toni, this is the second consecutive year the event will be taking place.
“Ben’s diagnosis has affected our family in a big way. Before he was diagnosed, we didn’t even know what aplastic anemia was, but watching him go through it all has made us a lot more active in both the aplastic anemia community and in terms of giving back to the community through blood donation,” Hopkins said. “We have a whole new perspective now.”
Hopkins and her husband, Zach, first knew something was wrong when they began noticing petechiae, round spots that appear on the skin as a result of bleeding, on their son’s skin. Immediately after, Zach took Ben to a pediatrician who then requested blood work be done. These results showed Ben’s platelets were extremely low, as were a few of his other accounts.
The next step to diagnose the toddler was to have him transferred to the Children’s Hospital of Philadelphia where more blood was drawn, additional tests were run and a bone marrow biopsy was taken. While the annual incidence of aplastic anemia is only about two cases per a population of 1 million, its consequences are known to be quite serious in patients of the disorder.
For example, CHOP was able to determine that Ben’s bone marrow had stopped functioning and could not produce the critical cell lines that make red blood cells, white blood cells and platelets — confirmation of aplastic anemia. This inability caused him to become dependent on blood transfusions every two to three days for several months after his diagnosis to survive.
Yet, as a result of his bravery, immunosuppressive drugs and the medicine, Cyclosporine, the 5-year-old can now function independently and without the required transfusions since August 2014. However, the only real cure for Severe Aplastic Anemia is a full bone marrow transplant, for which there is no match for Ben, most likely due to his varied ethnicity.
Years later, Ben is doing much better, has higher counts and plans to wean off Cyclosporine by September. However, the Hopkins family still works to stress awareness and participation in blood donation, platelet drives and in bone marrow collection. Although Ben is off to start kindergarten at Sacred Heart School in Mt. Holly in the fall, Toni admits that as his mother, the potential need for a future bone marrow donor for Ben is constantly in the back of her mind.
“I was very sick when I was 3, but I was able to get better because people donated blood. So, donating blood is important to other people so they can get better,” Ben said. To make an appointment to donate at this event, call 1–800-RED CROSS or visit redcrossblood.org. Sponsor Code: BraveBen
“Blood and platelet donations often decline during the summer months when busy summer schedules and vacation plans can cause some donors to be less available to give,” said Beth Toll, external communications manager for the Red Cross Penn-Jersey Blood Services Region. “Additionally, blood donations at high school and college blood drives, which account for as much as 20 percent of blood donations during the school year, decline when many schools are out of session. But, the need for blood remains constant all summer long to help patients in need, like Ben.”
