Every three weeks, Little Rock, Arkansas parents Ann and Beau de Gruy place their one-year-old son, Declan, in his carseat and head to the hospital, knowing the emotional day they have ahead.
"They're long days. It's not just a short visit," Ann says. "We're probably there over seven hours."
Declan was diagnosed with Diamond-Blackfan anemia at just three months old. Diamond-Blackfan anemia, or DBA, is a rare blood disorder that occurs when the body's bone marrow fails to make red blood cells. So while he and his family await news on a potential marrow transplant, those hours spent receiving blood transfusions are trying – and absolutely life-saving. To date, Declan has received 18 blood transfusions.
Ann says she can see an immediate difference in the health of her child following a transfusion. "He has so much more energy," she says. "He's eating better and he's growing better and he's just all around happy."
While many patients with DBA can be treated effectively with steroid therapy, Declan has a severe form of the disease that has left him transfusion-dependent. Complicating matters further, Declan's blood type is also O-negative, which means he can only receive transfusions from other O-negative donors. Due to the nature of O-negative blood – it's considered the universal blood type and is frequently needed for emergency transfusions – its availability is an ever-present concern for the de Gruy family. That reality, Ann says, "is terrifying."
From all of us at Our Blood Institute, we wish the de Gruy family a healthy and happy holiday season.
