Parents talk about losing 2 sons to sickle cell disease
They share their story as part of Sickle Cell Awareness Month
ROCHESTER, NY (WROC) – Vernal and Narseary Harris’ first child, Paul, seemed like the picture of health, at first. One night, however, when he was six months old, he started crying and wouldn’t stop.
Harris then noticed that his hands were badly swollen, a telltale sign of sickle cell disease, which Paul would be diagnosed with.
“It was just a traumatic few days in both of our lives,” Vernal said.
Sickle cell disease is incurable, often painful and hereditary. Despite this, Narseary learned that her next baby would be fine, so they had a second, Solomon.
“Six months later, he looked exactly like his brother,” Narseary said.
“Pain attacks” are what doctors call when the body hurts so badly that you usually have to go to the hospital. There were times when the doctors had the two brothers in the same room.
“We went from bed to bed,” Vernal recalls. “Narseary would go to this one and I to the other. We tried to give each of them mother-father attention because it was a horrible experience in this hospital.
Dr. LeKeyah Wilson, medical director of community pediatrics and wellness at Rochester Regional Health, says sickle cell disease is a blood disorder that can be fatal.
“It’s more prominent in the community of color,” Dr. Wilson said. “One in 13 African Americans may have sickle cell trait and 1 in 500 African Americans will have the full-blown disease.”
Dr. Stephen Webb was the boys’ pediatrician.
Asked about research and treatment, Webb blamed cultural bias for the delays.
“I think if the United States Senate had five relatives with sickle cell disease in its ranks, we would be quite different,” Dr. Webb said.
If there is ever a remedy, Paul and Solomon will not see it.
They died as adults and they died leaving their parents with sadness and strength.
“They never blamed their faith, they never blamed God for what they were going through,” Narseary said. “I’m grateful for the lives of my children, I’m grateful for the life they touched, I’m so grateful to have been their mom, but it burns me, it makes me sick to know that moms and dads are still going through this, that the kids are suffering because there is no cure.
But there is hope, and even joy for the Harrises, as they now have grandchildren and even great-grandchildren who remind them of their brave boys. Despite their best efforts to avoid pregnancy, Vernal and Narseary ended up having a third child, Elijah, who was tested and does not have sickle cell disease.
The test is easy and most newborns are tested for sickle cell disease, but if you are unsure if you have been tested, please consult your doctor.
You can also find much more information about symptoms and treatment, here.