The journey of the Watts family with sickle cell disease began with both joy and uncertainty. Like many families, Velvet Watts welcomed the birth of her son with dreams, plans, and hope for his future. Shortly after his birth, those dreams were reshaped when newborn screening confirmed a diagnosis of sickle cell disease a complex, inherited blood disorder that affects how red blood cells carry oxygen throughout the body.
In the early days, the diagnosis came with unanswered questions, and a steep learning curve. Medical terms became part of everyday conversation. Hospital visits, medications, emergency room trips, and pain management plans quickly became routine. Velvet and husband, and family learned that sickle cell disease is unpredictable; pain crises could appear suddenly, infections could escalate quickly, and long-term complications required
constant monitoring.
As a family, Velvet and her husband was not only navigating the emotional weight of seeing their child in pain, but also learning how to advocate within a healthcare system that often lacked understanding, consistency, and coordinated care for individuals living with sickle cell disease- a broken system. The family experienced firsthand the gaps in education, access, and support that many sickle cell families face.
Over the years, the disease shaped every aspect of family life — school decisions, work schedules, travel plans, and mental well-being. Yet through these challenges, the Watts family developed resilience, strength, and an unwavering determination to ensure their child had the best quality of life possible.
As Velvet connected with other families, she began to recognize a shared story, parents feeling isolated, caregivers overwhelmed, and individuals with sickle cell struggling to be seen and heard. Too many families were navigating this journey alone. Out of this lived experience, purpose was born.
Velvet transformed her personal journey into a mission to serve other founding Supporters of Families with Sickle Cell Disease, Inc. What began as a response to her family’s needs became a growing movement to educate, advocate, and provide wraparound support for families impacted by sickle cell disease across Oklahoma and beyond.
The organization was built on the belief that families deserve accurate education, coordinated care, access and responsive support, and trusted community connections. Programs were created to address real-life challenges, from transportation and food insecurity to education, youth empowerment, caregiver support, and healthcare navigation.
For the Watts family, sickle cell disease is not just a diagnosis it is a lived reality that continues to shape their lives. It is a journey marked by resilience, advocacy, faith, and community. Through pain and perseverance, the family has helped turn challenges into action and uncertainty into hope.
Today, the story of the Watts family stands as a testament to what happens when lived experience meets purpose. Their journey continues — not only for their own family, but for thousands of families who now have support, resources, and a community that understands that no one should face sickle cell disease alone.