Story by Laura Purcell, volunteer
Sienna Staples was diagnosed with sickle cell disease when she was just two weeks old. She is now 11 years old, and while the disease presents challenges, she can live her life to the fullest and pursue her hobbies including music, cheerleading, and running cross country thanks to regular blood transfusions.
Sickle cell disease is a blood disorder that causes red blood cells to be hard and crescent-shaped instead of soft and round. As a result, blood has difficulty flowing smoothly and carrying oxygen to the rest of the body. Patients with sickle cell disease can suffer a range of conditions, including acute anemia, tissue and organ damage, terrible pain, and even strokes.
Sienna’s symptoms were fairly mild for the first few years of her life until she had her first stroke when she was seven years old. After having three more strokes and visiting with a neurologist, Sienna was diagnosed with Moyamoya disease, a condition that affects the blood vessels that supply blood to the brain. Since then, she has been through brain surgery, several hospitalizations, MRIs, MRAs, and chronic blood transfusions.
“She takes it all in stride and never complains,” Sienna’s mother Suzettra said. “It’s as normal to her as breathing.”
The strokes also caused developmental delays and Sienna is working with a neuropsychologist in certain areas. She doesn’t let any of this keep her from doing the things she loves.
“Sickle Cell doesn’t tell me what to do. It’s not the boss of me. I’m the girl boss,” Sienna said.
The biggest challenge for Suzettra is being able to take a step back and let Sienna define her own journey. “I want to protect her from things, but not control or write her journey,” Suzettra said. “She refuses to be swayed by anything other than the wind at her back and the songs in her heart and head. It really is beautiful to watch. Her independence is such an inspiration!”
Sienna is currently receiving blood transfusions every four weeks. Blood transfusions increase the number of healthy red blood cells in the body, helping to deliver oxygen throughout the body and unblock blood vessels. Because of the need for these regular transfusions, blood shortages are always a looming threat. Suzettra, Sienna, and other families who depend on transfusions are hopeful that someday scientists may come up with an alternate product, but for now, blood from generous donors is all they have. There is no substitute for human blood, and it is perishable.
Sienna always feels better after a blood transfusion. “When I get new blood, my body is like, “Alright girl, we’re ready now! Here we go!” she says.
A grateful Suzettra encourages anyone looking for a way to give back to consider donating blood.
“Giving blood doesn’t cost you any money,” she said. “It’s a small step but makes a world of difference. There are lives that literally depend on these blood transfusions.
"We absolutely need donors, don’t ever think that we already have enough or that your donation won’t make a difference.”