Take one look at Saleea Cornelius, of Renton, and you'll see a typical teen who loves computer games, volleyball, and the singer Cardi B. What you won't see is the disease that has shaped her life—or the medical team that's been with her every step of the way.
Since she was born, 13-year-old Saleea has grappled with sickle cell disease, a life-threatening blood condition that requires constant treatment. In sickle cell disease, the red blood cells start out typically—as round, soft disks. But if they are stressed, they become curved, shaped like a sickle. They are hard and sticky and can clog blood vessels. This can cause frequent infections, pain, and blocked blood flow.
Saleea was very sick the first time she came to Seattle Children's at just 2 weeks old. Her white blood cell count was high, she was screaming in pain, and she was even struggling to wake up. "There was nothing we could do for our baby," Saleea's father, Demont Cornelius, says. "Everything was a question mark."
But the sickle cell experts at Seattle Children's Odessa Brown Children's Clinic have cared for Saleea since that terrifying first visit.
"Now we have answers, but they're not easy ones," Demont says. "Every time Saleea walks out the door, she could come home with a cough that leads to a chest infection or pneumonia — and more hospital stays and medication. No matter what happens, even if we need to call for help at 3 a.m., we know our medical team is there for us. They're like our second family."
Demont says he feels truly blessed for the hospital and the people who support it. With a chronic disease like sickle cell disease come expenses, and lots of them. "We have insurance, but Saleea's medicines, blood tests, and emergency room visits aren't completely covered," he says.
"We're so grateful that Seattle Children's can pick up most of the rest of the costs through their Uncompensated Care Fund. Our lives would be dramatically different without that help, and we feel truly blessed for all the people in our region who step forward and support the hospital — and families like ours."
It Starts With Yes: The Campaign for Seattle Children's
Imagine having a chronic disease where, out of the blue, you suddenly experience episodes of excruciating pain. Since you appear "normal" and there are no signs of injury, many people do not believe you and accuse you of just wanting pain medicine.
Unfortunately, that's exactly what happens to children who are born with sickle cell disease — a condition that disproportionately affects people of African, Hispanic, Middle Eastern, and Mediterranean descent. The situation is further complicated by racial biases and difficulties accessing healthcare for many affected kids from low-income families.
Treating sickle cell disease involves cutting-edge molecular and cell biology, as well as advocating for better access to healthcare and increased education in underserved populations. Great strides have been made and children with sickle cell have the hope of living longer and better lives—and even being cured—but only if they can get the expertise and services they need.
Your support of It Starts With Yes: The Campaign for Seattle Children's helps ensure children living with this chronic, painful disease have access to life-changing care. Through donations, Seattle Children's aims to raise $1 billion to transform children's health for generations to come.
If you're interested in learning more and donating to this worthy cause, be sure to tune in to KOMO News on Friday, June 14, at 8 p.m. during the Miracle Makers Special. And visit https://www.seattlechildrens.org/giving/it-starts-with-yes/ to find ways you can help.