Meet Jordan

Bio:

Diedre can’t suppress her smile when she talks about her son. Jordan, a 9-year-old basketball fan, has always been a source of happiness for his family and people around him. His smile and sweet spirit rub off on anyone he meets. Jordan loves to do things that most pre-teen boys like, such as basketball, playing Fortnite and hanging out with his brothers. One of the things that makes Jordan unique is that he has been living with the pain and complications of sickle cell disease, a serious and lifelong disorder that causes his body to make sickle-shaped red blood cells, which are sticky and stiff. For children with sickle cell disease, blood flow becomes blocked in the blood vessels and causes pain, infection and organ damage.

When Jordan was born, he had a severe case of jaundice, and his medical team alerted his parents immediately that it could be caused by sickle cell disease. His family was aware of a genetic component and that the risk existed, but their family was still surprised when Jordan was diagnosed with hemoglobin SS, the most severe form of sickle cell disease. Shortly after his birth, Jordan’s grandparents retired from their jobs to help with his care to prevent him from attending daycare. His mom, Diedre, emphasized that keeping Jordan healthy became a family affair. For Jordan, the slightest illness, even if not sickle cell disease-related, usually meant that he was admitted to the hospital. As Jordan has gotten bigger and stronger, these hospital stays have become less frequent. When he was in Kindergarten,

Jordan began taking medication to help manage his disease. While the medication seems to keep him healthy, many side effects must be monitored. His care team at St. Louis Children’s Hospital continues to see him every three months to check his vitals and monitor the side effects of his medication. When Jordan turns 12, he will become eligible for a research trial using medication to try to cure sickle cell disease, and Jordan’s family is hopeful for continued research in this area.

In the meantime, Jordan continues to excel in school and plans to learn how to play golf soon. He enjoys spending time with his three brothers. His family is trying to keep him as healthy as possible so he can continue to play basketball and pursue his dream of becoming a professional basketball player. According to Jordan, if that career path doesn’t work out then he will consider becoming a doctor.

Because of You:

Jordan's family is confident in his medical team at St. Louis Children's Hospital, and they credit them with keeping him healthy and able to play sports and attend school. Jordan's mom, Deidre, is thankful for the support from Child Life Services to keep him comfortable while in the hospital. Jordan is excited to attend Camp Crescent, a donor-funded camp for children with sickle cell disease, this summer where he can meet other kids who are just like him.