Age 11 - St. Louis Children's Hospital

Sean was born in May of 2003, and was diagnosed with Sickle Cell Disease as a newborn. Sickle Cell Disease is a blood disorder that can be passed down to a child if both parents are carriers of the trait. While Sean was born with the disease, he has a brother and sister who have the trait but not the disease.

Sickle Cell Disease affects children in various ways. Unfortunately, Sean has been diagnosed with the worst type of the disease—Sickle Cell Anemia. Due to the severity of the disease, Sean had his spleen removed as a toddler and has endured several blood transfusions.

The most common symptom of Sickle Cell Anemia is pain crisis. As an infant, it was difficult to detect when Sean was having an episode. Sean's pain crisis used to last at least 10 days and would often times end with a hospital visit to receive pain medication. However, as he grows up, Sean learns more about the disease and what activities he must avoid in order to manage the pain. For example, he plays only non-contact sports and stays in the house on very hot or very cold days. It is often difficult for Sean to cope with his inability to participate in such activities. But, he’s a trooper and deals with the disease the best way he knows how.