Olivia “Livy” Shorter is just 7 years old and, in many ways, Olivia is a typical little girl. She loves cheerleading, baking cookies, and listening to Beyonce. She is the little sister to brothers Adam, 11, and Dylan, 9. As typical as Olivia is, she has lived with the burden of a chronic, incurable illness for all of her young life — something most children will never understand.
When Olivia was just 7 days old, she was diagnosed with sickle cell disease.
Sickle cell disease is a genetic disorder that causes red blood cells to become misshapen and break down. For Olivia, it requires many treatments and transfusions to care for or prevent sickle cell-related complications. She is also at risk for bacterial infections and other complications.
Olivia has been treated for sickle cell since she was 5 months old, undergoing blood transfusions and IV fluids every three weeks. This equates to more than 100 transfusions in her short life. Olivia’s regular hospital visits for transfusions and treatments last hours because it takes at least two hours for the blood to be matched as closely as possible to minimize complications, then the transfusion itself can take an additional two to three hours. On top of this regular treatment, Olivia had her spleen surgically removed when she was only 6 years old in order to ease the blood transfusion process.
Amid all of the challenges Olivia faces, her spirit remains generous and kind. For her seventh birthday, Olivia told her parents that she wanted to host “a party for the children with sickle cell, to see them and meet them and have fun with them.”
Olivia’s mother knew that the family had to honor her selfless request. “Despite her illness, Livy is so loving, caring, and joyful,” she says. “Her birthday is Sept. 20 and September is Sickle Cell Awareness month, so we decided to throw a party for all the kids and families that make every day a triumph.”
On Sept. 16, 2017, Olivia and her family hosted not only a birthday party for children with sickle cell and their families, but also a blood drive with the American Red Cross. The event, which attracted over 200 people, was terrific. “While the children were partying, parents and friends donated blood to help children with sickle cell,” her mother explains.
The best blood match for an African-American child with sickle cell disease usually comes from an African-American donor. At Olivia’s birthday blood drive, African-American blood donors could mark their blood donation with a blue tag. The American Red Cross blue tag program, a national effort that partners regionally with the Ann & Robert H. Lurie Children’s Hospital of Chicago, identifies donations that should be earmarked to go specifically to sickle cell patients like Olivia.
“We are going to try to have a sickle cell birthday party and blood drive to honor Livy and the children with sickle cell every year,” her mother says. “Livy manages her situation with such patience and grace, it is an honor to celebrate her.”
The Blood Services Award is presented to an individual(s) or organization that is involved in activity that creates awareness of the importance of blood donation, helps to ensure a sufficient and safe blood supply is available to patients, and/or serves as an advocate for the blood community.
Follow #RedCrossHeroes on Facebook, Twitter, and Instagram for updates about the 2018 Heroes. For more information about the 2019 Heroes Breakfast, click here.