No Parent should wait so long to know the name of their child's disease

Ivan was born at 38 weeks. During his early childhood, he seemed like a healthy child, and like any parents, we dreamed of watching him grow, learn, and enjoy a normal childhood.

But when Ivan was around four years old, everything began to change.

He started becoming sick frequently and struggled with repeated infections. Hospital visits became part of our lives, and stays of 10 to 14 days became almost normal for our family. Each time, we hoped we would finally understand what was happening to our son.

We went from one hospital to another, from district hospitals to referral hospitals, seeking answers. We met different healthcare professionals, underwent investigations, and followed medical advice. Yet, despite all our efforts, Ivan remained without the correct diagnosis.

For almost nine years, we lived with uncertainty.

We knew our child was sick. We could see him struggling. But we did not know what disease he was fighting or what the future held for him.

The delay was not because we stopped looking for help. It was largely because rare diseases were not widely recognised, awareness among healthcare professionals was limited, and specialised genetic diagnostic testing was not readily available.

Those years were incredibly difficult. There were hospital bills, long journeys to seek care, sleepless nights, fear, and countless questions. Most painful of all was the feeling of not knowing how to help your own child.

Eventually, Ivan received the correct diagnosis. After years of searching, we finally had a name for his condition—a moment that brought both relief and heartbreak. We finally understood what had been affecting him, but precious time had already been lost.

Sadly, Ivan passed away at just 10 years old, without receiving a bone marrow transplant.

Losing a child is a pain that words cannot fully describe. But Ivan's story continues to live on through the work of Ivan and Joan Foundation Tanzania.

We share his story because we do not want other families to spend years searching for answers while their children continue to suffer.

No parent should have to wait nine years to know what is making their child sick.

Early diagnosis can change a child's journey. It can help families understand the condition, access appropriate care, seek timely treatment, and make informed decisions about their child's future.

Ivan's story reminds us why awareness, early recognition, genetic testing, timely referral, and access to appropriate treatment matter.

Through Ivan and Joan Foundation Tanzania, we continue to raise awareness of rare diseases, engage and educate healthcare professionals, support affected families, and advocate for better access to diagnosis and care in Tanzania.

We carry Ivan's story forward not only to remember him, but to help create a future where other children have a better chance.

Every child deserves a diagnosis.
Every family deserves answers.
Every child deserves a chance.