Nemours Children’s Health patients Naheim Smith and Reign Jefferson were both diagnosed with sickle cell disease at a young age. Thanks to treatment at Nemours, Naheim has been cured of sickle cell disease, and Reign is now better able to manage the disease and is thriving.
On June 11 and 12, Naheim and Reign joined the National Office’s Federal Affairs team on Capitol Hill, along with Dr. Stephanie Guarino, a hematologist/oncologist at Nemours Children’s Hospital, Delaware, as a part of the Children’s Hospital Association’s annual Family Advocacy Day.
Naheim’s and Nevaeh’s Story
Naheim was diagnosed with sickle cell disease when he was under a year old. During his early childhood, he experienced pain crises and strokes, which led to many hospital visits at Nemours Children’s Hospital, Delaware. After one stroke, his doctors discovered he had Moyamoya disease – a rare disorder caused by blocked arteries at the base of the brain, which resulted in two brain surgeries. Living with sickle cell disease and Moyamoya prevented him from doing the things he loved, like celebrating holidays, attending birthday parties and just being a kid.
“What I have experienced is a lot to go through, I’ve had so many surgeries and experienced a lot of pain crises…all the bad stuff. You can’t live a normal life,” said Naheim.
“Living with sickle cell disease has been hard on the entire family,” said mom, Andrea.
“It affects everything you do, everything. You might be able to go outside when it’s a nice day, but you can’t stay out too long. You can’t even go to the beach when it’s too hot because that might trigger a pain crisis. No matter what you do, everything revolves around sickle cell. It affects all of us,” she said.
When Naheim was 10 years old, his care team, led by Drs. Robin Miller and Emi Caywood, suggested a bone marrow transplant (BMT). After testing they discovered his sister, Nevaeh, was a 100% match.
While a family member, particularly a sibling, is often the best source for a BMT, the procedure involves significant risks. For Nevaeh, who was just 4 years old at the time, none of that mattered.
During her stay in the hospital for the BMT, she drew a special picture of herself, a superhero wearing a big cape. Her path forward was clear.
“I just wanted to save him,” she said.
Reflecting on that time Naheim says, “It felt awesome. Once I heard that, I almost started crying because of all the pain I had from sickle cell. [The pain] just went away thanks to her.”
He still visits the hospital for check-ups to manage Moyamoya, but the days of frequent hospital visits are over. Now, Naheim can enjoy his two favorite things – theme parks and basketball – without fear of a pain crisis. All with his superhero sister and his parents by his side.
Reign’s Story
Reign’s family found out that their daughter had been diagnosed with sickle cell disease within days of her birth. While sickle cell is an inherited disease and one that was already affecting other family members, learning that their newborn daughter had it was devastating for her mother, Elecia.
Nurse Monica, at Nemours Children’s Health, Jacksonville reassured Elecia their family could manage the disease.
“We had just come home from the hospital after having Reign and nurse Monica called to check on us. Hearing Reign had sickle cell was the worst news ever. I have an aunt and uncle who passed away from it, and I was hoping she didn’t have it,” she said.
Elecia was distraught, but Monica reassured her that thanks to groundbreaking research and new treatments, there was a better outlook for her daughter. Monica’s knowledge about sickle cell helped reduce Elecia’s fear about baby Reign’s diagnosis and future.
Now, at 10 years old, Reign is a straight-A student who loves music, dance, and fashion and wants to be a doctor when she grows up. Alongside her Nemours care team, Reign and her family participate in an annual sickle cell awareness walk in Jacksonville to advocate for other children just like her.
We are grateful to both families for sharing their stories and advocating for policies that help children stay healthy and get the medical care they need. Their powerful stories helped highlight the importance of children’s hospitals and the high-quality care we provide.
