In the days after Tiara Thomas gave birth to her son Ethyn, she learned devastating news.

“The realization of having to be scared all the time, be on edge all the time, knowing that my child will never have a normal life,” she said.

The routine heel stick performed on newborns at the hospital revealed Ethyn had the most common genetic blood disorder in the United States — sickle cell disease. It affects 1 out of every 365 Black or African American births.

“He can never do some of the things that a normal child does. It was just very upsetting.”

In people who have sickle cell disease, red blood cells are hard and shaped like a crescent, instead of being soft and round. The blood cells can’t adequately carry oxygen throughout the body, which can lead to extreme pain, organ damage, anemia and sometimes even strokes. Many patients will need several blood transfusions throughout their life.

“The Red Cross has meant everything because, if my son has to get a transfusion, and even if it’s not my son, there are so many other people in the world that need these transfusions.”

Ethyn is a toddler now and like all toddlers, Tiara said sometimes he can be a “handful,” but most of the time he is “laid back or playful.”

He loves music and starts dancing when he hears it. He also loves books he can touch and feel.

At times it’s hard to know if he is in pain. Whenever he gets a fever, Tiara has to rush him to the emergency room to make sure he’s not having a complication that could threaten his life. Sometimes he has to be admitted.

When she thinks about the biggest challenge moms of kids who have sickle cell disease face, Tiara said unfortunately there are too many to choose from.

“One of the biggest, for sure, would be the fear of not knowing when my son could possibly take his last breath due to this disease.”

She’s speaking out about her son’s diagnosis to help other people who suffer from sickle cell disease and to get the word out about what everyone can do to help – most importantly donate blood. “Please donate, please.”

Tiara works as a community health worker at Crescent Foundation, an organization that helped her when her son was first diagnosed. “They have been a blessing to me and my son. I love working there.”

Crescent Foundation helps people learn about sickle cell disease and get the resources they need to thrive.

“They know how passionate I am about this cause and how dedicated I am.”

Discovering your child has a genetic disease can be overwhelming.Tiara said when she found out it hurt “unbearably” and she “cried like a baby for weeks.” A community of supporters, like the American Red Cross and Crescent Foundation, can help.“

You’re not in it alone, you’ll get through it.”

One in 3 African American blood donors are a match for people with sickle cell disease. To help make sure patients get the blood they need, the Red Cross is working with partners in Black communities to increase the number of blood donors who are Black.

Tiara said, “As African Americans, we have been in some trying times. Unfortunately, that’s always been our case. However, these last few years, we’ve seen us come together. And I feel like we should do the same when it comes to this call because this is another form of protecting our community.”

To schedule an appointment to donate blood, visit RedCrossBlood.org, use the Blood Donor App or call 1-800-RED CROSS.

- Written by Jenny Farley, Submitted photo