World Sickle Cell Day is a reminder of the strength behind every diagnosis, and Elani’s story is one of them. Diagnosed at birth, she remembers childhood as a cycle of hospital visits and late-night emergencies. “Most of my childhood memories involve the hospital,” she says. “A sudden pain crisis would send me to the emergency room, sometimes every three months. If it wasn’t pain, it was sickness. Even a common cold could lead to a hospital visit.” Before she arrived at St. Jude, her life centered on managing symptoms and preparing for the next crisis.
A New Kind of Care
Starting treatment at St. Jude changed everything. “St. Jude was the first hospital I ever visited that truly felt like it was built for kids like me,” she says. Her care team asked about school, friends, and her life outside of her diagnosis. “They made an effort to view me as a person, not just a patient. Because of St. Jude, my illness stopped ruling my life.”
Her Path to Pastry
During the pandemic, Elani found comfort in the kitchen. “I’ve always loved the kitchen. I loved watching cooking shows and competitions,” she says. She started baking bread every week during quarantine, then began making cookies for friends once school resumed. “I was known as the baker.”
Baking became more than a hobby. “You experience the freedom of the kitchen while facing the technicality of pastry. It’s creative and structured at the same time. I never had such freedom with my illness, and I think that’s what inspired me to pursue baking as a career.” She now works in professional kitchens while studying pastry.
What People Don’t See
Sickle cell affects her daily life in ways that are not always visible. Fatigue is one of the biggest challenges. “It’s beyond having low energy. It feels like exhaustion from doing the simplest tasks,” she says. Balancing college and work in the food industry can be difficult, especially when others do not understand what she is managing. “Some people think I’m choosing to sleep my day away. They don’t consider how rest is non negotiable for me or how I could trigger a crisis if I don’t recover.”
Community Matters
Elani credits her family for helping her understand her illness early on. “My mom educated me about sickle cell and how it could affect my life. I knew about my medications, avoiding germs, and how heat or cold could trigger a crisis before I even entered elementary school,” she says. “Because of my family’s support, I wasn’t scared of my illness.”
Her friends now play an important role too. She is open with them about what she needs, and they adjust when she needs rest or space.
Learning to Advocate
Adulthood has brought new responsibilities, and managing a chronic illness adds another layer. “Navigating adulthood is challenging for everyone. Managing an illness as well can feel impossible, but I’ve learned to take things one day at a time,” she says. She sets accommodations when needed and communicates openly with classmates and coworkers. “I never limit myself in what I can or can’t do. I just find ways to adapt.”
Achieving Her Dreams
Elani is preparing to study in France and hopes to open her own bakery. “I have such a passion for baking that I know I can’t let sickle cell get in the way of my dreams. I refuse to,” she says. “While my illness may be physically limiting, I truly feel that I can achieve anything I set my mind to, and so can you.”
Her Message to Others
To other young people living with sickle cell disease, Elani shares a simple message. “Living with an invisible illness is challenging, but you are never alone. I wouldn’t be able to live the life I have without support from others.” She believes awareness starts with honesty. “Talk about everything. The pain, the fatigue, the fear of when your next crisis could come. People have to know what you’re going through to know how they can support you.”
Resources:
St. Jude Children’s Research Hospital
Sickle Cell Disease Treatment Program | St. Jude Care & Treatment
