Sickle Survivor Stories

My name is Maite Rodriguez. When our daughter, Alessia, was diagnosed with sickle cell disease, we didn’t fully understand what it would mean to live with it—or how deeply it would impact our family. Over the six and a half years Alessia fought this illness, we experienced constant worry, endless precautions, and the heartbreak of watching her in pain. We learned just how fragile life can be, and how precious even the smallest moments truly are.

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A transplant once felt like a distant glimmer of hope, and going through it felt almost unreal—because for so long, our lives were defined by the activities we could only imagine doing “post-transplant.” Though the journey was daunting and, at times, terrifying, it was nothing compared to even the mildest of Alessia’s pain crises.

 

Today, every day feels like a gift, and our hearts are overflowing with gratitude for this second chance at life. Simple activities that were once impossible are now part of her everyday world. Watching a child who spent so much of her life battling this disease live freely—and even cross items off her bucket list—is truly priceless.

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One piece of advice: ask every question. Your treatment team should have backup plans for the backup plans. Being informed can turn fear into hope—and hope into something truly life-changing.

My name is Hannah Beautiful Ssebuliba, and I was diagnosed with sickle cell disease at just two years old in Uganda. When my parents first received the news, my father said, “Let’s accept that we have got a handicap in the family.” It was a moment of painful acceptance, but also the beginning of our journey with resilience. Because of stigma in our society, my family kept my condition private—but within our home, I was surrounded by love and unwavering support.

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Growing up, my teachers all knew me as the student who was absent the most. Pain crises interrupted my childhood again and again. Hospital visits became routine. At one point, I suffered a stroke—an experience that changed everything and reminded us how serious this disease can be. Then came a turning point. When the opportunity for a bone marrow transplant (BMT) became available, we saw it as a second chance at life. It was not a decision we made lightly. We sought counseling from former transplant patients, caregivers, doctors, and the entire medical team who would care for me. We asked questions. We listened. We prayed. And we prepared ourselves for the journey ahead.

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Today, I am one year into my healing process. I continue to seek advice from caregivers, fellow survivors, and my medical team. My advice to survivors is believe in the process but seek counseling from informed people. My life has been transformed. For the first time, I can look forward to a more normal school experience.I am committed to reaching out to other young people living with sickle cell disease—to encourage them, support them in school, and remind them that hope is real.

My name is Kay-Diene, and my journey to being cured of sickle cell disease was the longest marathon I’ve ever endured. A simple cheek swab on a college campus revealed an unrelated donor who was a better match than my own sibling, yet I resisted the idea of an allogeneic bone marrow transplant for months.

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At 25, I knew how to live with sickle cell—the pain, the hospitalizations, the community, and even the expectation of a shortened life. What I couldn’t fathom was life without the disease I was born with. That changed when my mother asked, “What do you have to lose?” and my transplant doctor made me feel heard for the first time.

 

On September 11, 2016, I stepped into the steepest learning curve of my life: living with normal hemoglobin, a new blood type, and a second birthday. My story carries grief and struggle, but also faith, hope, and the unexpected joy of thriving ten years post-transplant.

My name is Taylor John, and I am a proud sickle cell survivor and gene therapy recipient. My transplant didn’t just save my life—it transformed it. For the first time, I can travel without fear, walk through airports without a wheelchair, and even visit high-altitude places like Colorado without going into crisis. Moments like these remind me how far I’ve come.

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This second chance has allowed me to return to school, rebuild relationships, and enjoy everyday moments with my family. I can jump into a pool with my cousins without worrying that the cold will trigger pain—something that once felt impossible.

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With healing came purpose. I am committed to advocating for stronger mental health support for patients undergoing gene therapy and transplant. These journeys are filled with uncertainty, hope, and deep emotion, and no one should have to walk them alone.

My name is Wunmi Bakare, and I was diagnosed with sickle cell disease at just 18 months old. Growing up in Nigeria, I quickly learned that sickle cell was often treated as a social stigma—something families hid out of fear of judgment.

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My journey with sickle cell included unimaginable challenges, including a life-threatening infection in 2015 that left me hospitalized for weeks and given six months to live. After years of fighting to survive, hope arrived in 2019 when I joined a clinical trial at the NIH and underwent a bone marrow transplant—made possible by my brother, Daps, being a perfect match.

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Life after transplant hasn’t been without challenges, but it has been transformative. Today, I experience less pain, fewer hospital visits, and more freedom to live fully. I now lead my own sickle cell non-profit and advocate globally for the sickle cell community.

 

Sickle cell did not define my limits—it became my greatest teacher, shaping how I live, lead, and thrive beyond treatment.

Hi, my name is Yetunde Felix-Ukwu, and I had a bone marrow transplant in 2009. The bone marrow

Hi, my name is Yetunde Felix-Uku, and I had a bone marrow transplant in 2009. That transplant represents a chance at life for me. My life prior to the transplant was incredibly difficult—filled with pain, setbacks, delays, and limitations. There were so many things I simply could not do physically because of my illness.

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Since having the transplant, life hasn’t been perfect, but I now have a chance. There is no longer a barrier between me and the goals I dare to dream. It has meant freedom. It has meant gratitude. True gratitude. Whenever I’m able to do something I once couldn’t, or experience joy that was previously denied to me, I’m reminded how meaningful those moments are.

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On the days I wake up in pain, I’m still grateful—because pain is now a rare occurrence rather than my everyday reality. Sometimes I wake up and think, Wow, this used to be my normal. Now it’s an inconvenience, not my life. And for that, I am deeply thankful.

Hello, my name is Zacharie Liman-Tinguiri. Receiving a bone marrow transplant in 2015 to cure my sickle cell disease has given me a new lease on life. While the transplant was ultimately successful, it introduced a new, less severe chronic condition: graft-versus-host disease.

 

Since my transplant, I have experienced many blessings. For one, I haven’t spent a single night in a hospital bed in ten years. Being free from constant physical pain and having greater certainty about my future have allowed me to fully embrace each day. With this renewed energy, I’ve been able to advance my career, become an active father to two beautiful daughters, and enjoy life to the fullest.

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My brother, Karim, was my donor, and I am incredibly grateful to him. Not all siblings are willing to make such a selfless gift.​ I am now leveraging my lived experience and professional skills to help others with sickle cell disease. This inspired me to create the Sickle Cell Knowledge and Information Network (www.sckin.org), whose mission is to make reliable, useful information on sickle cell disease universally accessible.

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One key lesson I’ve learned from my journey: healthy people often underestimate how precious health truly is. If you preserve your health, all other challenges become more manageable and surmountable.