Robert and Tanique Mitchell still remember the moment they found out that their granddaughter, Kiarra Roseburgh, would be born with sickle cell disease (SCD).
“We realized that we needed to prepare, and we made two goals as a family: to provide emotional support for Kiarra and to empower ourselves as caregivers,” said Tanique Mitchell, explaining that her daughter and the daughter’s boyfriend had learned through prenatal testing that they both carried the mutation which causes SCD. “Our emotions are secondary to supporting Kiarra, who is a blessing.”
For the past two years, Kiarra — now 10 and a fourth-grader at Philadelphia’s Watson Comly School — has represented the Sickle Cell Disease Association of America (SCDAA) as national child ambassador.
On June 22, the SCDAA will host the 6th annual Walk With the Stars at Baltimore’s Canton Waterfront Park. The event — expected to attract more than 200 people — falls three days after World Sickle Cell Day on June 19. It’s not a race, but rather a gathering to support SCD patients, families and caregivers, and to raise both awareness and money to support a cure.
“The event celebrates movement in any form,” Beverley Francis-Gibson, the organization’s president and CEO, said in a phone interview. “Some people walk, some people run, and others do zumba or jump rope.”
Walk With the Stars, the SCDAA’s largest event, has raised more than $500,000 since its inception. Funds support the work SCDAA does both at its Baltimore headquarters and at chapters across the nation, providing direct services, information and referrals.
“Every year I run and the rest of the family walks,” said Robert Mitchell. “I want to run to be strong for my granddaughter to let her know that no matter what, we can do it.”
Paying it forward
Blacks account for most SCD patients in the United States. According to the SCDAA, about one in 13 African-American babies is born with sickle cell trait, and about one in 365 black children is born with SCD. To a lesser degree, the disease also affects people of Hispanic, Middle Eastern and Asian Indian origin.
The Mitchell family began participating in Walk With the Stars when Kiarra was 2, forming a team called “Kicking it With Kiarra.” The team quickly grew to friends, colleagues at work and church, and finally sponsors, who helped make the team Pennsylvania’s top fundraiser for three years in a row.
Kiarra, who likes to dance, draw, play basketball and hang out with her friends, became the SCDAA’s national child ambassador in 2017 after a nationwide search. Nominees were required to submit a video on why they should be selected, and also had to submit letters of support. Tanique posted a request on social media, asking supporters to write such letters, and pretty soon more than 100 emails poured into the SCDAA office.
As national child ambassador, Kiarra has visited Pennsylvania’s state house in Harrisburg, talking with lawmakers — including Legislative Black Caucus Leader Jordan A. Harris — about SCD and how it has affected her.
She also participated in Philadelphia’s 21st Annual Walter E. Brandon Sickle Cell 5K Walk/Run last September, and spoke to 1,500 women at the 2017 “Soiree in the Cities” where she received the “Women of Worth-Girl Power” Award.
Kiarra also started a pen-pal program that helps her make contact with other children who have SCD. When her family members learn of children who have crises or complications — like the 8-year-old girl who recently lost her gallbladder — they will contact those kids’ parents through social media, offering support and asking if they can be in touch.
“We’ll pick up a small item and send a letter, encouraging the child to write back,” Tanique said. “This allows Kiarra to become friends with other children who have SCD.”