By JoAnn Weaver
September is National Sickle Cell Awareness Month. According to the CDC, sickle cell disease occurs in one out of every 365 African American births.
About one in 13 African American babies is born with sickle cell trait. Parents of a young girl, who has sickle cell anemia, are urging people to get vaccinated to protect those who are immunocompromised.
“I am a funny person who is goofy, love to draw and paint and I have a kind heart,” 10-year-old Olivia Mike said.
With a personality that soars through the roof, Olivia is just like every other fun-loving child except that she lives with a disease that makes it difficult to fight infections. The pandemic has changed her life.
“It changed my life a lot because we all had to go into shut down and we haven’t seen anyone that I didn’t get to see my friends,” Mike said. “I missed seeing my friends and seeing my teachers.”
If Olivia contracts COVID-19 it could be devastating, even fatal. Because of this, she and her family do everything they can to keep her safe. Keionna Mike, Olivia’s mother, said the bubbly 10-year-old was diagnosed as a newborn at St. Louis Children’s Hospital.
“Her father and I both carry the sickle cell trait, so Olivia needed to get tested,” Mike said. “They determined she had sickle cell disease, not just the trait.”
Olivia is attending 5th grade in-person at Henderson Elementary, where protocols in place are not only necessary but can be lifesaving for immunocompromised students.
“We meet every year to go over her needs,” Keionna said. “They make sure she gets extra water, rest time and bathroom breaks, even excuses from gym class.
“There are mild symptoms that can lead up to bigger issues with sickle cell disease, so they’ve been really great and flexible.”
According to the Francis Howell School District’s online COVID-19 pandemic policies, district staff and students are required to wear masks and social distance to protect the vulnerable young population, who at this time cannot get vaccinated.
“Before COVID, kids would have gym on a Monday and art class on Wednesday, but now the kids are grouped in rotations, so they have three weeks of gym, then three weeks of art, music, so on, so it keeps exposure to COVID down because if one of the kiddos get COVID, they are able to contact trace it,” Keionna said.
The Mike family encourages others to wear a mask and get vaccinated to protect immunocompromised children like Olivia.
Dr. Monica Hubert, Washington University Physician at St. Louis Children’s Hospital and director of the Sickle Cell Disease Program at St. Louis Children’s Hospital, talked about how she’s worked with Olivia since she was a baby and how important it is to protect immunocompromised individuals.
“At Children’s Hospital, we’ve been really proactive in encouraging vaccinations in people who are eligible to get it,” Hubert said. “In addition to children over the age of 12, we have conversations with parents to get vaccinated to protect themselves, their children and the community as a whole.”
Hubert also said it’s been easier to talk to families about the COVID-19 vaccine since she has built a rapport with them to care for kids who have sickle cell disease.
“In the case of Olivia and other kids like her, we’ve been taking care of them since they were babies identified with sickle cell on their screenings,” Hubert said. “We build up trust with these families which makes it easier to have conversations about vaccinations since they trust us to do what’s best for their child.”
There are 100,000 people in the United States with sickle cell disease. However, there has not been enough funding to discover the best treatments and ensure everyone with sickle cell disease has access to them, according to research from the American Journal of Managed Care.
Currently, the healthcare community is doing everything it can to encourage people to get vaccinated with the hope that stories like Olivia’s might help with those efforts.