By Erica Gadbois
When you ask Yolanda Jordan-Harris what her number-one request of Rady Children’s Hospital-San Diego doctors, nurses and staff caring for her daughter, Selina, is, she will be quick to answer. “Don’t baby her.”
Diagnosed shortly after birth with sickle cell disease type SS, the most severe form of the genetic disorder, Selina has never known life without it. The disease causes red blood cells to stiffen and form a sickle shape, which contributes to abnormal blood flow, low tissue oxygenation and symptoms that can include pain, breathing complications and potential organ damage. But Yolanda and her husband, Bryan, have been bound and determined to raise a fighter from day one.
“I tell her, ‘You have sickle cell disease. Sickle cell disease does not have you. You will not sit here and handicap yourself. Be proud of your [medical port] scars on your chest. These scars are what made you who you are today,” says Yolanda.
And who she is today is a strong 20-year-old who will not let sickle cell get in the way of her dreams. We first introduced you to Selina during Kids’ NewsDay 2012, and in the six years that have passed, she has been busy finishing high school, starting college, and, along with her mom, raising funds and awareness for the local sickle cell community — with a few adventures along the way.
Last year, as a high school senior, Selina was nominated to the homecoming court at Gompers Preparatory Academy, her educational home since sixth grade. Her entire family was thrilled, as was Selina — until she awoke on the day of the ceremony with a 103-degree fever. Like any royal would do, though, Selina pushed through. “If you don’t make it to homecoming, you don’t get this back,” Yolanda told her. “So we gave her some Tylenol, put her dress on and made it happen.”
The extra effort was not wasted, because Selina was crowned queen. After what Yolanda recalls as “the worst year” of Selina’s schooling — a highly trusted and beloved school nurse, who had cared for Selina for her entire time at Gompers and had become a big part of her and her family’s life, moved to another position — the win was a much-needed bright spot.
Selina and Yolanda also banded together with their community at Gompers and around San Diego to continue their longstanding tradition of giving back to fellow sickle cell families at Rady Children’s. “I don’t know the needs of these families, but I know they’ve got some,” explains Yolanda. “Food cards, gas cards — if they come in here with needs, somehow, some way, we should be able to fix that. I do better when I see other people happy. It just feels good.”
Along with a number of fundraisers at school and in partnership with local businesses, which raised several thousand dollars, Selina spent her senior project working with the San Diego Blood Bank to organize a Gompers blood drive. Blood transfusions are a core therapy for patients with sickle cell and can significantly decrease symptoms of the disease, so keeping local blood banks stocked can make a world of difference.
While she has a great attitude and a bright future, Selina’s journey has not been without hardship. “She’s had things that other sickle cell kids have not had,” says Yolanda. By the time Selina was 10, the disease had thickened and narrowed her carotid arteries, in turn significantly reducing blood and oxygen flow to her brain. As a result, she developed moyamoya disease, a rare brain condition in which new blood vessels forming in the brain tangle in response to low blood flow. For Selina, this complication also triggered a stroke that caused some lasting developmental delays.
More recently, she was prescribed infusions of tissue plasminogen activator (tPA), which works to dissolve blood clots and improve blood flow. tPA is often used in conjunction with regular blood transfusions to treat patients with sickle cell, and in Selina’s case, it was to used to help prevent clots from forming around her port catheter. However, after her first dose, Selina exhibited “rigors,” or major tremors. Although a subsequent allergy test showed no sensitivity, when she broke out in hives after another dose, she was quickly placed on an alternative blood thinner. Later on, Selina did develop a clot, but is doing well with a new medication.
Selina visits Rady Children’s, her care home since she was 2, for monthly transfusions and yearly sonograms of her major organs. She and Yolanda have formed a bond with core physicians Jenny Kim, M.D., director of the Comprehensive Sickle Cell Center, and Nadine Benador, M.D., director of the pediatric dialysis and apheresis programs and clinical professor of pediatrics at UC San Diego School of Medicine, and are “bummed” to be moving on to adult care once Selina turns 21 next year. However, she will not be in totally new hands. The family’s favorite infusion nurse, Kim, who Yolanda credits as being “the bomb dot com,” also works at Selina’s new facility. “All of the staff are great, but there’s nobody like Kim,” Yolanda gushes.
Now, Selina and her mom are looking ahead. Selina is a freshman at Educational Cultural Complex, an extension of the San Diego Community College District, and is studying child development. She also recently started a part-time job at a day care center. In preparing Selina for college and the working world, Yolanda had her take a developmental assessment. “I wanted to see exactly where she is mentally, age-level,” she explains. Although the report showed Selina to be in line with 7-year-olds, versus Yolanda’s anticipated 12 or 13, Selina took it in stride and with a sense of humor. “She said, ‘You at least could have given me 8!’,” her mom laughs.
Beyond completing school and starting a career, Selina and Yolanda have another grand goal — making September, National Sickle Cell Awareness Month, as widespread and well-known as Breast Cancer Awareness Month. “I want stuff in the stores — sickle cell pins, t-shirts, ribbons, all of that stuff,” Yolanda says. While raising funds for research and care is a top objective, the family’s priority runs deeper than that. “We want people to know they’re not alone,” explains Yolanda, who continues to note she also wants more people to understand that sickle cell disease can arise in people from all ethnic backgrounds.
Although the majority of patients diagnosed with sickle cell are black, the condition also commonly affects those of southern European, Hispanic, Middle Eastern and Asian Indian descent. “It’s not just about African-Americans,” she says. “It’s about all colors. Everybody bleeds red.”
Published September 2018