Phoenix Children’s recently announced a groundbreaking collaborative research project focusing on the population of individuals with Sickle Cell Disease (SCD) in Arizona. This initiative, conducted in partnership with the Centers for Disease Control and Prevention (CDC), Arizona State University’s Center for Health Information and Research (CHiR), Arizona Department of Health Services (AZDHS), Banner Health, the Sickle Cell Foundation of Arizona and members of the sickle cell community, aims to understand and learn about SCD at the population level in our state.
We are excited to introduce two patient/family representatives, LaDeidre and Olufisayo, who are part of the Sickle Cell Data Collection (SCDC) project.
Meet LaDeidre Harris:
We are thrilled to introduce LaDeidre Harris, one of the community patient/family representatives involved in our SCDC project. LaDeidre brings invaluable perspective to our team, and we are deeply grateful for her willingness to share her family’s journey with sickle cell disease—the hurdles, triumphs and lessons learned along the way.
LaDeidre moved from California to Arizona in 2006 and currently works in the finance sector within the mental health industry. As a mother of three, two of whom live with sickle cell disease, she has navigated the challenges of caregiving, often feeling the weight of "figuring it out as you go" when it comes to managing this complex condition.
As a single parent, LaDeidre has faced many challenges, but sickle cell added an extra layer of difficulty. Even with family support, caregiving often became overwhelming, and maintaining her own physical, emotional and mental well-being was an ongoing struggle. Her eldest daughter, now 26, underwent a bone marrow transplant two years ago—a positive step in addressing her sickle cell but one that led to new challenges as the family now manages a different chronic illness: diabetes.
LaDeidre is passionate about contributing to the SCDC project for several reasons:
- Her children are growing older, giving her more time to engage in advocacy and community work.
- She has accumulated years of experience as a caregiver and is eager to learn more, both for her own growth and to continue supporting her children as they navigate the complexities of sickle cell disease.
"Sickle cell disease deserves the same focus and attention that other illnesses, like cancer, receive," LaDeidre says, expressing her hopes for more awareness and resources.
One of LaDeidre’s personal goals is to establish a support network for caregivers of chronically ill children. She dreams of creating a program that offers respite care for parents during inpatient visits, help with errands, babysitting and emotional support—particularly for single parents or those without strong support systems.
LaDeidre is excited to contribute to the SCDC project. She envisions it as an opportunity to map out where Arizona’s sickle cell patients are located, identify gaps in available resources and foster collaboration among healthcare providers, state agencies and community members. Ultimately, her hope is that this project will lead to better support and services for those affected by sickle cell, improving their quality of life.
We are fortunate to have LaDeidre on board and look forward to the positive impact her insights will bring to this important initiative.
Meet Olufisayo Akinnaso – or Fisayo,
for short:
Fisayo is one of our valued community patient/family representatives for the SCDC project. We’re thrilled to have him on board and look forward to his contributions as we move forward with this important work.
Originally from Philadelphia, Fisayo moved to Arizona seven years ago to escape the cold weather, which had a negative impact on his condition. After spending some time in Yuma, he and his family—his wife and young daughter—relocated to Phoenix.
As someone living with sickle cell, he appreciates Arizona’s warmer climate, which has made a big difference in his day-to-day well-being.
While Fisayo has always had to manage the complexities of a chronic illness, he recalls that his early adult years, from age 18 to his mid-20s, were especially challenging. "Transitioning into adulthood and trying to contribute as an adult wasn’t easy," he shares. During childhood, his family had insurance through his father’s job, but once Fisayo was on his own, things changed. Though he worked, his job didn’t offer insurance, and his income disqualified him from certain healthcare resources. The financial strain of medical bills and hospitalizations made this a particularly vulnerable time in his life.
Fisayo is eager to be part of the SCDC project for several key reasons:
- As a father of a young daughter with the sickle cell trait, he wants to make a difference for her and for any future generations she may one day have.
- This project gives him the opportunity to have a voice—however small—that can reach others and spark positive change.
- He feels a sense of empowerment by being involved. This project allows him to say, "I helped make things better" for those living with sickle cell in Arizona.
While there have been encouraging developments in recent years, such as new medications and emerging treatments like gene therapy, Fisayo notes that sickle cell still lacks the recognition and support it deserves. He remembers a time not too long ago when there was very little information or resources for people with sickle cell. But he’s hopeful that the SCDC project will help shine a brighter light on this historically underserved community.
Fisayo’s passion, insights and lived experience will be invaluable as we continue our work to improve the lives of those affected by sickle cell disease in Arizona.