When Mary Minnigan took her then 8-year-old son Dejuan to his first appointment at Levine Children’s Hospital, she knew he wasn’t quite himself. Still, she never could have imagined what the doctor would say when he examined Dejuan: “Your son might be having a stroke.” She knew Dejuan and his younger sister Erika had sickle cell disease, but never knew that a stroke was even a possibility.
Mary says, “I found out that he had already had three mini strokes that went undetected, and he had a major stroke on that day. And ever since then, this place has changed our lives.”
When Dejuan was diagnosed with sickle cell as an infant in 2001, Mary knew next to nothing about the serious disorder. She soon learned about the importance of regular appointments, blood tests and treatments. And how even a simple cold or fever could mean a hospitalization. “They’ve been hospitalized dozens and dozens of times,” she says.
For Erika and Dejuan, now in their teens, coming to appointments is a regular part of life. Like their mom, they have become actively involved in their care. For example, they know they need to drink plenty of water. “It makes your blood plump and fluffier,” says Erika. Staying hydrated helps alleviate problems such as pain crisis, which occurs when the rigid, crescent moon-shaped blood cells for which the condition is named block blood flow.
Though sickle cell is the most common inherited blood disorder, there is little overall awareness of it. For families like the Minnigans, September – National Sickle Cell Awareness Month – is a welcome opportunity for the community at large to learn more about the disease.
For instance, they’d like others to know that appearances can be deceiving. Erika says, “People might think, ‘There’s nothing wrong with her.’ Then, reality hits.” She adds, “I used to cheer in 8th grade, but I didn't want to try out this year. I have to take more breaks than everybody else and sit down and just rest.” Erika says she also has to avoid getting overheated.
Mary agrees. “You look at them, and you think, ‘Oh, they look like everything’s fine.’ But, it really does affect people’s lifestyles and their overall health. It’s a scary, scary disease to have.”
To date, Dejuan has had five strokes. It takes regular blood transfusions to help prevent and treat further complications.
Still, the siblings have a strong support system in one another and in LCH. Mary says, “This place is like family. I love everybody here.”
The feeling is mutual for Jennifer Starnes, a clerical team supervisor who works closely with Mary in managing the teens’ care. Even as a healthcare provider, Jennifer didn’t initially understand the health risks and demands associated with sickle cell. When Mary, a single mom, first came to LCH, she struggled to keep appointments. Together, Jennifer and Mary worked to develop a system that ensured that everyone stayed on track. Jennifer says, “To help them be pre-emptive in taking care of themselves along the way – I'm extremely proud of that. Every time I see Mary, it just fills my heart with joy.”
