Sick Cells met with Olivia Sessi—a first-time participant in the annual Sickle Cell Disease (SCD) Policy Forum—to learn about her experience meeting with federal representatives. For Olivia, a first-time advocate, mother, entrepreneur, and caregiver, this is a mission rooted in love, survival, and hope. Living in Utah and raising her son Lennox, a cancer survivor who also lives with SCD, Olivia juggles two jobs while running her own business. Her goal? To create opportunities for her son, advocate for improved care, and build a support system for families affected by SCD in Utah—where low prevalence of the disease combined with lack of provider knowledge and experience results in an inconsistent standard of care for patients with SCD.
Overcoming Nerves and Finding Her Voice
Olivia’s advocacy journey began with a Google search. It was Lennox who first found Sick Cells. That led to a conversation which changed everything. “Sick Cells told me I didn’t need to go to school or be a professional advocate—I just needed to tell my story. That really stuck with me,” Olivia recalled.
Olivia agreed to participate in the 2025 SCD Policy Forum, a 2-day, hands-on event designed to inform sickle cell advocates on critical SCD policy priorities, train advocates on how to speak with their federal representatives, and share what matters to the community in a live Virtual Hill Day Session. As a first-time advocate, Olivia felt the pressure. She was the only representative from Utah, and that came with a sense of responsibility—to her family, her community, and others living with SCD in the state. “I didn’t want to mess up,” she admitted. But despite the nerves, Olivia pressed forward, determined to share her and Lennox’s truth.
Her first meeting with a legislator was “a little rocky”, but she wasn’t alone. She was paired with a SCD warrior from Nevada, and together they found their rhythm. “He started by sharing his experience living with SCD, and I followed with my story as a caregiver—talking about what it’s like to live in Utah, where few people even know what SCD is.”
When it came time to speak with legislators, Olivia noticed some appeared indifferent—but she didn’t let that shake her.
“The Sick Cells training warned us that might happen. But many of them asked questions, and when I talked about not getting help in the ER—that’s when they really started to listen,” she said.
Olivia described the challenges of navigating the healthcare system. The prevalence of SCD in Utah is low (estimated at less than 200 people in the state) and there is no SCD center to treat patients with SCD. Olivia shared her experience taking her son to the ER, where she repeatedly had to explain the condition to doctors, many who never had training in hematology, let alone experience treating an individual with SCD. That changed when Lennox’s doctor sent them to the “Acute Care Center” of the Huntsman Cancer Institute at the University of Utah that could support Lennox during a crisis.
Advice for First-Time Advocates
Her message to anyone considering advocacy?
“Tell your story. That’s all you need. It might be different for those of us in places like Utah, where people don’t know what SCD is. But your voice matters. The more personal you are, the more people listen.” For her, that meant leaning into the details that made her story real. She found that when she mentioned Lennox’s age, people paid closer attention. “A lot of staffers are young, and can empathize,” she said. Small, human details helped turn policy conversations into moments of connection.
Through every challenge, it’s Lennox’s strength and outlook that keep Olivia going.
“His mentality is phenomenal. He’s been through so much, but he still has hope. That survival instinct comes from our immigrant experience. Coming here was hard—but if we hadn’t come, we wouldn’t have made it. We’ve survived, and we’re still standing.”
What’s Next?
Olivia is just getting started. Though Lennox was not able to attend this year’s Policy Forum (he needed a blood transfusion that day) Olivia hopes to share their story through video and build a stronger community for those living with SCD in Utah.
She dreams of creating a local support group and reaching others who feel isolated. “People don’t always believe him because his disability isn’t visible. That’s why sometimes he doesn’t want to advocate. But I want people to know what he’s going through. I want to share his story.”
She’s also looking forward to staying connected with Sick Cells, learning more about the Ambassador Program, and finding ways to keep the momentum going.
As Olivia continues to build connections and raise awareness for families like hers, she invites others to do the same. And in sharing her story, she’s already begun to change the narrative.
Would she meet with legislators again? “Absolutely. Our collective voice is powerful.”
Published April 2025