Fighting The Stigmas: Meet Daylen, the Sickle Cell Warrior

Sickle Cell Awareness Month is recognized each September. For many of the more than 100,000 Americans living with the disease, acute painful episodes and chronic pain happen year-round. As if living with sickle cell disease (SCD) isn’t tough enough, they often face stigmas that come with fighting the disease.

People with SCD suffer from sickle cell pain crisis. These symptoms can lead to absenteeism from both school and work. This may create a false impression that the person with SCD is “lazy.”

Twelve-year-old Daylen Parrish, a patient at Cook Children’s Medical Center since 2009, understands both the pain and stigmas all too well. He was 10 days old when his family first met Clarissa Johnson, M.D., a hematologist/oncologist and lead physician at Cook Children’s Sickle Cell Program.

Daylen’s mother, Erikah, says they met Dr. Johnson on her first day of work at Cook Children’s, and though that moment was scary, that wasn’t where their story began.

Erikah and her husband both carry the sickle cell trait, which one in every 13 Black or African American children are born with. Since they were aware they were carriers, the couple had conversations about not having children because they knew their child would likely be born with SCD. They were surprised when they found out they were expecting and knew they had a long road ahead of them.

Daylen spent the first few years of his life in and out of Cook Children’s.

“It became our second home,” Erikah said. “We were there eight to 10 times throughout the year. It was hard as a mother because when he was young and couldn’t speak, I didn’t know if he was crying because he was a baby or because he was in pain.”

She says one thing that she vividly remembers is the learning curve and the hard days of ‘trying to get it right and figure things out.’

Erikah says Dr. Johnson was good to her family from the very beginning.

“I remember her telling me we were going to try everything we could to make sure Daylen lived as normal as a life as possible,” she said.

“I've been managing his care since he was a newborn,” Dr. Johnson explained. “His parents have always been very receptive to any sort of new therapies that are out there and they just want what’s best for him. We all want what’s best for him, and want him to live his life, even with SCD.”

Daylen would agree Dr. Johnson has kept her promise to do just that.

“I love being at Cook Children’s,” he said. “It’s like a hotel, and better than being at school, except the pain part. But it’s a nice break, who wouldn’t like a break with good food?”

As Daylen has gotten older, his trips to Cook Children’s have become less frequent, but he’s faced new challenges.

“I can’t do what my other friends can do at school,” Daylen explained. “Sometimes at recess, I have to stop and take a break. Or if I am playing with my friends outside, I have to stop a lot.”

Daylen says this is because he becomes tired and cannot push his body to keep going like the rest of his classmates or friends. He says this has been hard for him because sometimes he feels like he doesn’t fit in and can’t do the things others can do.

Erikah says she is proud of her son every day for his fight through daily tasks and SCD episodes. Additionally, she says Daylen has the most supportive and kind friends that anyone would be blessed to have and she is thankful for them being inclusive to her son. 

Another challenge Daylen faces is the daily medications and doctors’ visits that he says other kids don’t have to go through.

“He takes hydroxyurea, which is one of the common therapies that we use for patients with sickle cell,” Dr. Johnson explained. “Generally, that has worked out well for him. There's a newer drug, not FDA approved yet for his age, but he was able to participate through a clinical trial and is receiving that, and that does seem to potentially be offering him some benefit also.”

Daylen says he understands the importance of having to take his medications, go through clinical trials and attend his doctor’s appointments, but he hopes for a day when things can be normal for him.

“All the doctors and nurses have become family to us,” Erikah said. “From day one, I have never felt alone at Cook Children’s and have met other families who have children with SCD and it has made this process so much easier for us. We are grateful for Cook Children’s.”

“I love the doctors and nurses at the hospital,” Daylen said. “I am glad they help me when I am sick.”

Dr. Johnson says fostering those relationships with patients and patient families is important.

“It helps when you have a relationship with a family, to be more of a partner in care,” Dr. Johnson said. “There is built-in trust there when you’ve been with a family through multiple scenarios, so it helps when you have a relationship.”

Daylen and his family are hopeful there will one day be a cure for SCD, but until then, they will continue their fight and share their stories to encourage others.

For more information on SCD, listen to Dr. Johnson on “Unraveling the Complexities of Sickle Cell Care” on Cook Children’s Doc Talk podcast.

What is sickle cell disease (SCD)?

Sickle cell disease (SCD) is an inherited blood disorder in the United States. It causes the body’s red blood cells to harden and become shaped like crescents, or sickles, instead of resembling healthy, round discs. Sickle cells can get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These changes in cells can cause repeated episodes of severe pain, organ damage, serious infections, or even stroke. A person with SCD is born with it. People cannot “catch” SCD from being around a person who has it.

This serious disorder is most common among people whose ancestors come from Africa, South and Central America, the Arabian Peninsula, India, and Mediterranean countries, including Turkey, Italy, and Greece. In the U.S., it is especially prevalent in the African American population, where an estimated one in 500 people has the disease. This often-invisible and rare disease impacts over 100,000 people— most of whom are of African descent and will require regular blood transfusions to help manage their disease.