Samir’s story: Specialized sickle cell care empowers patients to dream big

In June 2019, Natosha Thompson and her family made the decision to move back to New Orleans to care for her mother, who had recently been diagnosed with dementia. This transition was especially challenging because Natosha’s son, Samir, has sickle cell disease, a serious and life-altering condition that requires ongoing medical care.  

Sickle cell disease is an inherited blood disorder that causes red blood cells to become rigid and shaped like sickles or crescents, rather than their normal, flexible, round form. These misshapen cells struggle to pass through small blood vessels, leading to blockages that can cause severe pain, known as a sickle cell crisis. Additionally, the abnormal cells tend to break down prematurely, leading to a chronic shortage of healthy red blood cells, a condition known as sickle cell anemia. This lack of healthy red blood cells reduces the body’s ability to carry oxygen to vital organs, which can result in fatigue, delayed growth in children, and an increased risk of infections. Patients with sickle cell disease often require medication, regular monitoring, and periodic blood transfusions.  

For families like Natosha’s, managing sickle cell disease is a daily challenge, requiring constant vigilance, access to specialized medical care, and the emotional strength to handle the unpredictable nature of the illness. 

Samir’s hematologist played a crucial role in ensuring a smooth transition of his care to Children’s Hospital New Orleans, home to the region’s premier sickle cell program. At the hospital, Samir was introduced to Maria C. Velez, MD, a highly regarded hematologist-oncologist. From their first meeting, Dr. Velez's expertise and genuine compassion resonated deeply with Samir and his family, creating an immediate and strong bond that made them feel confident in the care he was receiving. 

“Since transferring to Children’s Hospital New Orleans, our experience has been nothing short of amazing,” Natosha said. “Samir absolutely adores Dr. Velez. Even though he’s approaching 18, and will eventually need to transition to an adult specialist, he never wants to leave her care.” 

Dr. Velez has taken proactive steps to ensure a smooth transition for Samir by introducing him to adult specialists at the Tulane Sickle Cell Center of Southern Louisiana. These specialists are working closely with Samir to prepare for his eventual transfer of care. Beyond his medical needs, Samir is also focused on his college applications, and both Dr. Velez and the specialists have been instrumental in guiding him. They’ve emphasized the importance of selecting a college in a city with top-notch sickle cell care, ensuring that his health remains a priority as he pursues his education. 

“The care I’ve received has been wonderful,” Samir said. “I really appreciate how Dr. Velez and her teams consider more than just my medical needs. They take my goals into account and help me plan for my future, making sure that my health is part of my bigger picture.” 

Samir is currently a student at the New Orleans Center for Creative Arts (NOCCA), where he is deeply immersed in media arts. His passion for filmmaking began at a young age, starting with puppets as his first actors and evolving into animation as he mastered the necessary software. Driven by his creative ambitions, Samir has set his sights on attending Howard University. His ultimate dream is to work at Universal Studios, where he hopes to bring his storytelling visions to life on the big screen. 

In the meantime, Samir continues to see Dr. Velez every three to six months and remains on a medication called hydroxyurea, which has been highly effective for him. Hydroxyurea works by increasing the production of a special type of hemoglobin called hemoglobin F, which helps red blood cells stay larger, rounder, and more flexible, reducing the likelihood of them taking on the sickle shape. While Samir still experiences occasional pain events, he has become adept at managing them and does not let his disease keep him from living a life full of big dreams.   

“It's truly an honor to care for patients like Samir,” Dr. Velez said. “Specialized care allows us to tailor treatment plans and identify the right balance of medications, helping our patients manage their condition more effectively. Our goal is always to help them live their lives to the fullest, with as much comfort and confidence as possible.” 

 “We truly can't say enough about Dr. Velez,” Natosha said. “She offers an incredible level of comfort and is always there for us, no matter what questions or concerns we have. It’s clear that she genuinely cares for her patients.” 

To learn more about the Comprehensive Sickle Cell Disease Treatment Program at Children’s Hospital New Orleans, go to https://www.chnola.org/services/hematology-oncology/hematology-services/