Jaaron, 20, has always been an “all-rounder” and had a range of interests. Ever since he was a kid he felt different since it was challenging for him to do even the simplest tasks. He would experience extreme physical pain throughout his body and would tire easily.
At birth, Jaaron was diagnosed with Sickle Cell Disease, specifically Hemoglobin SS, the most common and severe type of Sickle Cell Disease. At 5-years-old, Jaaron became a patient of the Jonathan Jaques Children’s Cancer Institute’s Sickle Cell Program at MemorialCare Miller Children’s & Women’s Hospital Long Beach.
Sickle Cell Disease is an inherited condition where a person’s red blood cells are a crescent, or sickle shape, rather than a round, donut shape. The sickle-shaped cells can stick to vessel walls, causing a blockage that slows or stops the flow of blood. When this happens, oxygen can't reach nearby tissues, which can cause many problems including attacks of sudden, severe pain, respiratory problems and strokes.
If sickle cell disease is left untreated, it can lead to severe anemia, organ damage or even death. In addition to frequent episodes of physical pain, Jaaron experiences other health issues as well. However, since Jaaron became part of the Sickle Cell Program, he has been receiving the care he needs to keep him healthy.
“Our Sickle Cell Program has followed Jaaron since he was young. Over the years, he has faced serious health challenges due to his sickle cell disease,” says Leigh Hunter, RN, MSN, CPNP, nurse practitioner, Jonathan Jaques Children’s Cancer Institute. “However, through the combined efforts of the care team at our Sickle Cell Program, and Jaaron’s determination, he is a thriving young adult with a bright future.”
Outside of the hospital, Jaaron never felt normal due to his condition and the symptoms he would face. “At school, people asked me why my eyes were yellow,” he explains. “I didn’t let it bother me and would just joke around and tell them I was a werewolf.”
Despite the academic and social challenges he faced, Jaaron always kept a positive mindset, even when he was in the hospital. Throughout the past 15 years, he was able to get to know the entire Jonathan Jaques Children’s Cancer Institute care team.
While the nurses give him his medications, they join him when watching videos on YouTube. Everyone knows Jaaron is a huge Ariana Grande fan and would support him by watching her performances together. He always had a great time with the team and they’ve become somewhat of a second family.
Although Jaaron’s time with the Sickle Cell Program will come to an end when he turns 21-years-old, his care team will ensure that he makes a smooth transition into adult care through their patient-centered Transition of Care Program and communication with his new adult Sickle Cell Center.
Outside of the hospital, since it’s difficult for Jaaron to participate in high physical activity, he enjoys activities that are “distracting, but encouraging.” He loves online shopping, video games, reading and writing. Recently, he picked up gardening and began growing flowers on his porch.
He’s also a math major at Long Beach City College and plans to transfer to a 4-year university soon. In the future, he wants to become an accountant. While he still has many years ahead of him, he’s continuing to work hard to achieve his goals.
“I often try to think about how things could always be worse,” explains Jaaron. “Right now, I’m healthy, happy and have an amazing support system, and that’s all that matters.”