Celebrating Strength During Sickle Cell Awareness Month - Meet Grace

Sickle cell disease is an inherited blood disorder that affects hemoglobin, the protein in red blood cells responsible for carrying oxygen throughout the body. In people with sickle cell disease, red blood cells can become rigid and take on a curved, or “sickle,” shape. These cells can have difficulty moving through small blood vessels, which may reduce blood flow and oxygen to parts of the body and lead to complications such as episodes of pain, anemia, and an increased risk of infection.

For children like Grace, that increased risk of infection means symptoms that might seem routine for other children can require urgent medical attention. Throughout her young life, Grace has made many trips to the emergency department, where even a simple fever requires immediate evaluation, lab work, IV fluids, and antibiotics to help prevent serious infections.

Living with sickle cell disease can require ongoing medical care and careful monitoring, but it hasn’t stopped Grace from enjoying the things she loves. She continues to face each day with courage, resilience, and a smile. A proud Girl Scout, Grace enjoys building with Legos and spending time with family and friends.

For Grace’s family, CHKD has been a trusted partner every step of the way.

“To know we have a children’s hospital here is one thing, but it’s another to see the level of care that the staff has towards the children and parents,” said Grace’s dad, Mike Petway. “It’s definitely been an eye-opener. We appreciate the care.”

September is Sickle Cell Awareness Month, an opportunity to increase understanding of the disease and recognize the children and families whose lives are affected by it. For families like Grace’s, access to specialized care, early intervention, and ongoing support can play an important role in managing the disease and its complications.

This month, we celebrate Grace and other children living with sickle cell disease — their strength, their resilience, and all the things that make them so much more than their diagnosis.