We Say Yes to Our Daughter’s Medical Family
By Demont Cornelius, Saleea’s dad
If you look at our daughter, Saleea, you’ll see a typical 12-year-old 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.
Saleea has sickle cell disease, which means her blood cells are crescent-shaped (not round), so they get stuck in her veins and can’t deliver oxygen to her whole body. This can lead to terrible pain, serious infections, daily medication and a lifetime of treatment.
But we know Saleea will be OK as long as she’s at Seattle Children’s Odessa Brown Children’s Clinic (OBCC). They have doctors and nurses who are sickle cell experts, and they’ve cared for Saleea since she was diagnosed at 2 weeks old.
When we came to Seattle Children’s that first time, Saleea was really sick. Her white blood cell count was high, she was screaming a lot and she was even struggling to wake up. There was nothing we could do for our baby, and that was heartbreaking. We had so many questions …
Now we have answers, but they’re not easy ones. Saleea has lived through emergency room visits, extreme pain, needle pokes and lots of medicine. Her immune system was so wiped out that she had to take penicillin for six years – and even then, she still got sick.
Our family lives with the fear that every time Saleea walks out the door, she could come home with a cough that leads to a chest infection or pneumonia. But 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.
OBCC is a very special place. Everyone knows each other, and they know us, too. They have other services, like dental and mental health, and I think we’ve used them all. Sickle cell affects the entire child, and the team at OBCC understands that – especially Dr. M. A. Bender, who has been with us since the beginning. He’s phenomenal, and we would never go anywhere else.
“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 Cornelius, Saleea’s dad
The cost of lifesaving care
To support Saleea, I took a job as a custodian at her school, so I can be close enough to act quickly and get to the hospital in an emergency. I’ve also worked as a cashier at Costco for 19 years, and my favorite project is selling the miracle balloons to customers and seeing the community support for kids like Saleea.
Even though I work two jobs and my wife has good health insurance, we still worry about the bills that come with treating a chronic disease. Saleea’s medicines, blood transfusions and emergency room visits aren’t completely covered by our insurance.
We’re 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 who step forward and support the hospital – and families like ours.
A lifetime of expert treatment
We don’t know how sickle cell disease will affect Saleea in the future. She’ll have to manage this disease throughout her life, and I could see her working in a job where she’s helping sick children. Saleea’s experiences at Seattle Children’s have given her a different perspective, because she really knows what kids are going through. She thinks the worst thing is to see a person hurting, and she wants to help other people feel better.
What I want in the future is more research about this disease. Seattle Children’s has a new research building going up where scientists will look for answers in the genes of kids like Saleea. I hope sharing our family’s story will build awareness, lead to better research and help more hospitals understand sickle cell disease.
We’ve been to other doctor’s offices and realized they don’t know enough about this disease. At Seattle Children’s, we’ve been coming for 12 years and have never had a bad situation happen with our care – not one! That’s amazing. I want that for Saleea and for every other child with sickle cell disease. No kid should be hurting like this.