“Adorable, energetic, athletic – he’s been making baskets in basketball since he could walk,” said physician assistant Jennifer Newlin about her patient Richard Duncan II. She’s known Richard, who goes by Deuce, since he was diagnosed with sickle cell disease as an infant.
Sickle cell is the most common inherited blood disorder. Instead of the red blood cells being circular and flexible, they’re crescent moon-shaped and stiff so they don’t do a good job of carrying oxygen throughout the body. This lack of oxygen-rich blood can lead to a variety of complications, some quite serious.
Deuce’s parents, Shannon and Richard, learned before he was born that there was a chance their baby could have sickle cell. After losing their first baby to miscarriage, genetic testing revealed they both carried the sickle cell trait. This meant their future children had a 25% chance of having sickle cell disease type SS (meaning they inherited copies of the hemoglobin S gene from both parents), a 50% chance of only having the sickle cell trait (receiving the gene from only one parent, not leading to disease) and a 25% chance of inheriting no sickle cell genes.
“I’d heard of sickle cell, and even knew a few family members who had the trait and the disease, but never imagined that Richard and I were carriers,” said Shannon. “Sometimes in life when things don't seem to go our way or line up with the vision we've set, we must continue to keep the faith and trust God at his Word. A couple months later we were pregnant again, and this time I was able to carry our miracle baby boy full term. Deuce was born in June 2013.”
Deuce’s newborn screening results came back a week later, revealing that he did in fact have sickle cell disease. While it wasn’t the news the Duncans were hoping for, they were determined to help their son thrive. That’s when they began coming to our ASK Pediatric Hematology and Oncology Clinic. He also began seeing Dr. Romesh Wijesooriya as his pediatrician.
The Duncans followed the recommendation of the medical team to give Deuce penicillin until age 5 to reduce the chance of infection. When he turned 2, he also began taking hydroxyurea – like many of the kids who get sickle cell care at CHoR – to help the red blood cells stay round and flexible. In addition to his hydroxyurea, he takes folic acid daily to aid red blood cell production.
One of the many complications of sickle cell disease can be severe pain. In Deuce’s eight years, he’s never had a pain crisis that required hospitalization.
“He had a high baseline fetal hemoglobin which is protective for him, AND he takes his hydroxyurea daily to keep his fetal hemoglobin high. The higher it is, the lower the percentage of sickle hemoglobin in his body which protects him from having pain and other complications,” explained Jennifer.
Teamwork helps Deuce thrive in school, sports and daily life
Deuce continues to love basketball, and baseball, and can play them thanks to great care from both his parents and his CHoR team. He comes to clinic every three months to check his blood levels, monitor progress and adjust medications as needed. He also has regular preventative studies like transcranial doppler (brain ultrasound) to look for signs of stroke, another potential complication of his disease.
Jennifer is always happy to see the Duncans.
“I love Deuce’s energy and enthusiasm, plus his parents are pretty amazing too! It’s fun seeing him as a great big brother caring for his little sister,” Jennifer added. “I enjoy seeing videos of his various sports endeavors. He’s also really inquisitive and likes to ask us questions in clinic, which is great!”
Shannon appreciates Jennifer’s genuine, friendly nature and that she makes Deuce feel “normal,” despite his disease.
Aside from taking medicine and going to the doctor more than most, Deuce does lead a normal life. Mom describes him as “Mr. Personality” and a “sweet, gentle spirit who loves to have fun.” In addition to sports, he’s a big fan of Fortnite, Nerf guns, riding bikes and playing with friends. He spent plenty of time over the summer doing all these things, in addition to a beach vacation and summer school to make sure he kept his academic groove going into third grade.
While Deuce is thriving with his medications, many kids - and adults - with sickle cell disease require blood transfusions to remain healthy and avoid serious complications. To help encourage blood donations, the Duncans host an annual blood drive at their church in Deuce’s honor.
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