At just seven days old, Olivia “Livy” Shorter, 7, was diagnosed with sickle cell disease, an inherited blood disorder that is characterized by production of abnormal hemoglobin, which is a protein in red blood cells that carries oxygen to the tissues.
“We read pamphlets and watched webinars but nothing prepares you for the horrible signs and symptoms of sickle cell disease. At 5 months old, Olivia experienced dactylitis. My chest tightens just thinking about it. It’s the worst experience in the world. Dactylitis, plainly, is watching your child being tortured (at random times) and there’s nothing you can do about it,” says Danielle Shorter, Olivia’s mom. “To ease her pain, she received the first of many blood transfusions, IV fluids and scheduled pain medicines.”
Sickle cell disease is the most common genetic disorder in the United States, and patients rely on 15 to 25 blood transfusions a year. The Sickle Cell Donor Program was started by Lurie Children’s and the American Red Cross to improve transfusion support for children with sickle cell disease.
“The disease is really tough on Livy. When she isn’t sick, she is getting over a cold or on her way to get a blood transfusion,” says Danielle. “Luckily, Lurie Children’s is such an inviting place that Livy loves her transfusion days.” Livy says, “I like Lurie Children’s because I feel better when I’m there and I have fun! I really love bingo.”
A Celebration for Kids Like Her
To celebrate her 7th birthday, Livy wanted to throw a special party – a sickle cell party. “Livy didn’t want any toys. She just told me, ‘I want to have a sickle cell party for kids like me!’” says Danielle. “Olivia has gone through so much in her young life. As parents, we want to give Olivia and her brothers the best life possible. Olivia inspires me to help spread awareness and generate research funding for sickle cell. Her birthday is September 20 and September is Sickle Cell Awareness month so I decided to throw a party for all the kids and families that make every day a triumph.”
Affecting approximately 70,000 African Americans, the best blood match for an African-American child with sickle cell disease usually comes from an African-American blood donor. Since children with sickle cell disease often need blood transfusions, it is best for kids like Livy to receive blood that very closely matches their own to minimize complications.
On Saturday, September 16, 2017, Livy and her family hosted their first sickle cell party blood drive with the American Red Cross at the Matteson Community Center. African-American blood donors were able to mark their blood donation with a “blue tag.” The blue tag specifies that the donation should be given to Lurie Children’s Cooperative Sickle Cell Donor Program, which directly benefits our sickle cell patients.
“I know the importance of blood donations personally. Without regular blood donations, Olivia’s hemoglobin levels will drop to the point where she could die. My daughter is alive because someone took an hour of their time to donate blood,” says Danielle. “We’re especially grateful for the blood tag program. This program seeks to lessen the occurrence of an allergic reaction that may occur. We, like other sickle cell families, receive transfusions regularly. I wanted to do my part to make sure there’s enough blood in the bank for all of us.“
The Shorter family hopes that their blood drive and sickle cell party will become an annual event to help raise awareness and much needed funds for sickle cell patients and research.
Lurie Children’s Sickle Cell Disease Program
The Sickle Cell Disease Program is a nationally recognized center of excellence that provides comprehensive sickle cell disease care to manage the disease and prevent its complications. Our program includes:
- Expert clinical care
- Family support services
- A cooperative blood donor program
- Community outreach
- A wellness initiative
- Research into the nature, causes and treatments of hemoglobin disorders
We work to improve the health and well-being of patients affected by sickle cell disease within a kid-friendly, family-focused environment. Our specialists are trained to treat children with sickle cell disease, meet their specific needs and counsel all family members on preventive treatment measures and serious complications.
Ask for a “blue tag” at any American Red Cross blood drive in the metropolitan Chicago area, and your donation could help a child with sickle cell disease. A blood donor card or driver’s license, or two other forms of identification, are required at check-in. Eligible donors must be at least 17-years-old, or 16-years-old with a signed Red Cross parental/guardian consent form where state permits, must weigh at least 110 pounds and be in general good health.
To make an appointment or for more information, please call the American Red Cross at 1-800-GIVE-LIFE (1.800.448.3543). All blood types are needed to ensure a reliable supply for patients.