Esley Mulungi

A Near-Fatal Crisis — March 31, 2020

At just 18 months old, Elsey's life hung in balance. He suffered a stroke, acute chest syndrome, a transient ischemic attack, severe pneumonia, and sepsis. These left him with no sensation, no mobility, and control over the left side of his body. We came face-to-face with death, but Esley held on for his life and pulled through.

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Living in Denial, Fear, Anger, and Tears

As young parents, it was a lot to deal with. Some days we felt strong, but on others we broke down under the weight of lingering, unanswered questions. We went through years of depressing moments, because all you ever want as a parent is for your child to be okay — to be normal like everyone else’s. Accepting that our son would need medication every single day for the rest of his life was a reality that was difficult to live with.

Watching him in pain during a crisis was unbearable, knowing there was little we could do except pray for relief. Seeing him unable to take part in the physical activities that every child longs for was heartbreaking. His heart was willing, but his body could not keep up. Each time he fell ill, anxiety gripped us, and fear took over — fear that things might get worse. This was the reality we lived with every day.

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Raising a child with sickle cell disease brought enormous challenges, not just for Esley but for us as a family. In search of a cure, we turned to bone marrow transplantation the only available option. In 2024, our lives changed when Esley’s older sister, Amber Mirembe, was found to be a perfect match.

In May 2025, Esley, now eight years old, underwent a bone marrow transplant in India. The procedure was successful and has given him not only a new lease on life but has also renewed us as a family.

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Through this journey, we have awakened to the plight of many children and families facing the same struggles; parents unable to access standard medication that improves quality of life, families who cannot afford life saving drugs ( Hydroxyurea & Antibiotics ) or diagnostic tests, and countless others with no access to advanced treatment like bone marrow transplantation.

Sickle cell disease is an invisible illness. From the outside, a child may appear fine, but inside they are fighting battles of unimaginable pain. Too often, people dismiss it with a glance and say, “Well, you look fine.” Yet behind that appearance lies a story of courage, resilience, and survival.

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Awakening to a Greater Mission

Our journey with Esley opened our eyes to the painful reality faced by thousands of children and families living with sickle cell disease. Many parents are unable to afford the essential medication that could improve their child’s quality of life. Families often struggle to meet the cost of diagnostic tests, and for most children, advanced treatments such as bone marrow transplantation remain completely out of reach.

Through Esley’s story, we have found our greater purpose to stand with children and families who face these same struggles, to raise awareness, and to advocate for access to life saving care and advanced treatment.