ROCHESTER, N.Y. (WROC) — Vernal and Narseary Harris’ first child, Paul, looked to be the picture of health, at first. One night, though, when he was six months old, he started crying and wouldn’t stop.

Harris then noticed his hands were severely swollen, a tell-tale sign of sickle cell disease, with which Paul would be diagnosed.

“It was just a traumatic few days in both of our lives,” Vernal said.

Sickle cell disease is incurable, often painful and inherited. Despite that, Narseary was told her next baby would be fine so they had a second, Solomon.

“Six months later, he looked just like his brother did,” Narseary recounted.

“Pain crises” is what doctors call the times when the body hurts so badly you usually have to go to the hospital. There were times the doctors had both brothers in the same room.

“We were going from one bed to the other,” Vernal remembered. “Narseary would go to this one and I the other. We tried to give each of them mother-father attention because it was a horrible experience in that hospital.”

Dr. LeKeyah Wilson, the Medical Director of Community Pediatrics and Wellness at Rochester Regional Health, says sickle cell is a blood disorder that can be fatal.

“It is more prominent in the community of color,” Dr. Wilson said. “One in 13 African-Americans can have the sickle cell trait and 1 in 500 African-Americans will have the full-blown disease.”

Dr. Stephen Webb was the boys’ pediatrician.

When asked about research and treatment, Webb blamed cultural bias for delays.

“I think if the United States Senate had five parents with sickle cell patients in its ranks we’d be far differently focused,” Dr. Webb said.

If there ever is a cure, Paul and Solomon won’t see it.

They died as adults and they died leaving their parents with sorrow — 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 thankful for the lives that they touched, I’m so grateful to have been their mom, but burns me, it sickens me to know that moms and dads are still going through that, that children are suffering because there’s no cure.”

But there is hope, and for the Harris’ even joy, for 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.

Testing is easy and most newborns are tested for sickle cell, but if you are unsure whether you’ve been tested, please consult your doctor.

You can also find much more information about symptoms and treatment, here.