Joan's Story: A Little Girl Who Taught Us the Meaning of Love

Joan was a beautiful, bright, and loving little girl. She had a gentle heart, a beautiful smile, and a special way of making the people around her feel loved. Like her brother Ivan, Joan’s journey with illness was not easy. From a young age, she faced health challenges that meant many hospital visits, difficult decisions, and moments of uncertainty for our family. We kept searching for answers and hoped that, one day, Joan would receive the care she needed.

Eventually, we received a diagnosis and were given hope. Joan had an opportunity to undergo a bone marrow transplant in India, which we believed could give our little girl another chance at life. Travelling to India was filled with hope, prayers, and uncertainty. We held onto the belief that after everything she had been through, Joan would come through the treatment and one day return home.

Sadly, things did not turn out the way we prayed.

Joan underwent the bone marrow transplant, but 86 days later, at just seven years old, she passed away.

She left us far too soon.

But when we remember Joan, we do not want to remember only the illness she fought. We remember the little girl she was.

Joan loved people. She loved being around other children and had a generous heart. She was always happy to share what she had with others, whether it was food, a toy, or something special to her.She was caring, cheerful, and full of life. Her kindness touched the people around her, and those memories remain deeply precious to our family.

Losing Joan after everything we had done to give her a chance at life was one of the hardest experiences our family has ever faced. But her life, together with Ivan’s, gave us a purpose.

Their stories became the foundation of Ivan and Joan Foundation Tanzania.

We carry their names because we believe their journeys should mean something for other children and families.

Their stories have taught us that families affected by rare diseases need more than treatment. They need early diagnosis, healthcare professionals who understand rare diseases, access to specialised genetic testing, timely referrals, appropriate treatment, psychosocial support, and above all, hope and love.

Although she is no longer with us, the kindness she showed continues to inspire us.